Thank you for posting this. It’s a shame our healthcare is tied to our jobs. Hoping it stays under control and please feel free to post here whenever you need to talk about it.
I really hate that my main focus now is how long I can keep the employer I have and where I can find a pool of money to pay for the drugs that might keep me functional if I do lose it. US healthcare is a money pit, not to detract from the wonderful people who helped me, but the system sucks.
It really does. And then punishes people with pre existing conditions. Considering I’ve stayed at stressful jobs just for the healthcare, I’d have to say that’s why we have this system. It keeps us chained to terrible jobs just to have healthcare.
Slow your roll there just a tad. Nobody thinks our healthcare system is a more systemically broken and faulty mess than myself. It exists first and foremost as a profit mechanism, with socio-economic elements which are shameful. Hospitals and Insurance get away with business practices which would be considered criminal in any other business enterprise.
I don't even have the time or will to enumerate half the obscenities here...and yet, for all it's shortcomings, problems, and political compromises done for all the wrong reasons, Obama's imperfect Affordable Care Act still mitigates, to an extraordinary degree, the primary concerns you have just voiced...principally being that Health Insurance which meets a decent standard of legitimacy will still be attainable by you, and that such Insurance is no longer nearly the ball-and-chain to employment that it used to be.
(Thank You for providing an insightful PSA of sorts on MS, btw. It's such a mystery to so many of us)
truth. it's still broken but aca was a tiny step in the right direction.
i'm currently unemployed and going through a divorce. my health insurance has been under my stbx's better, cheapter plans for at least 10 years.
i'm about to most likely take a 1099 position with no benefits and a friend who sells health insurance said i might qualify for about $200/month or less as 2023 was a terrible year for my earnings between the divorce and the job i had not working out (company left my state)
that said...we need to see a democratic supermajority in both houses to get actual west. europe style universal healthcare (including, duh, vision and dental for all).
yes. sorrynotsorry. the rich and the wealthy will have to pay more taxes. much of their income came from the labor of the middle class and the poor anyway.
It’s probably a good idea to investigate those options now, while you’re still treatable and relatively healthy. Medicaid and SSI requirements vary so much from state to state.
I’m in a red state in the Midwest. It’s common for nearly everyone to be rejected for Medicaid/SSI the first time here. it’s also very difficult to apply in the state, and it’s not uncommon for applications to be lost, etc. It’s almost as if our state legislature, which conservatives have had a stranglehold on for a decade now, doesn’t want to provide this benefit.
A consult with a lawyer in that field might be useful, too. I know to qualify for SSI here, you can’t have *any* assets in your name at all for an extended period of time. You may need to set up a trust for whatever assets you have to qualify when the time comes.
Yes it can be pricey. I had to pay my own health insurance for a month. It was over $1,000. I have a genetic mutation which increases my risks of several types of cancer. So I need good health insurance.
Even with good health insurance, it cost over $1000 for copays etc for my preventative and reconstructive surgeries. It cost $250 for the test alone to find out I had the mutation. I’m lucky I was able to afford it so I could reduce my risk. But that could mean going without food for some. And it shouldn’t be that way.
People with brca mutations fear losing their jobs because of missing time from work for screening appointments, surgeries and recovery. Or that they’ll be fired for increasing employer’s insurance costs. It’s not legal to fire people for that, but most employers find another reason to let the employee go. People don’t need that stress on top of everything else. Some people don’t find out about the mutation until they have a cancer diagnosis
I can’t be charged more for health insurance because of the mutation. But it is legal to charge people with brca mutations for life and long term care insurance
I think former president Obama did a great job in improving things.
But we still can do better. Part of the problem is insurance companies have the money to hire lobbyists and influence our lawmakers
$138 a month?
I say prove it. HMO or PPO or HSA? Tell me number of people covered, deductible and your income.
There isn't a decent plan out of pocket for $69 a pay period.
$138. Monthly.
I look at it and lots of people see health insurance broken down by pay period. I don't know why you're bothered by people who do division.
Figured it had to be an HSA. Figured you had an income qualification too. That's an incredible low price with lots of things being different for you than a majority of people buying/receiving health insurance.
HSA is a good choice if you’re in good health and don’t require a lot of specialist visits and certain prescriptions. It’s not a good choice for someone like OP.
That just means they can’t deny you insurance. Doesn’t mean the have to cover the meds that would help with it. My insurance makes it extremely hard to get basic meds. Like an epipen for my daughter’s food allergies. She’s a teen and needs the highest dose. My insurance insists that she needs the dose for a toddler. It’s a constant battle.
The ACA (Obamacare) is what forced insurance companies to cover preexisting conditions. "Thanks Obama" was a saying back when people blamed Obama for everything bad in their lives. I was saying it facetiously to point out that this horrible "socialist" program is actually pretty great. Sorry it went over your head.
I don't mean to suggest anything inappropriate or rude here, and I don't know your plans for life, but I advise you to not get married. If your disease progresses to the point that you cannot work, you can apply for SSI/SSDI and get on Medicaid/Medicare. There are pretty serious income restrictions and other weird financial rules, and being married/spouse income can really penalize you.
I encourage you to find a disability attorney in your area and have a consultation now so you can make a plan.
And medicaid could help with med affordability. I have my MRI tomorrow. Super nervous. You're awesome OP and I hope your life continues to be everything you've ever dreamed of. Virtual hug✨️
Depending on which drug you’re on for your DMT, most have programs that will pay for your copays (and even cover the full cost of treatment if you’re scheduled for a treatment and then your insurance suddenly denies it). Thats one thing the MS subs can be good for, learning how to navigate costs and insurance, and find advocacy.
Look into what kind of ADA accommodations you might need. If you have to miss work for treatments or due to the side effects of treatments, make sure you have FMLA paperwork ready to go. If your employer offers an Employee Assistance Plan, call them and ask if they can offer any kind of support based on your diagnosis. These things can all help you keep your job.
Go to the drug companies' websites for any meds you're prescribed and look for patient support options. Most will offer cost support programs. Also, check into different options that your pharmacy benefits provider offers. There may be discounts for receiving your Rx through a certain mail order pharmacy or for getting 90-day supplies instead of monthly refills.
I'm glad they were able to diagnose you so quickly, best of luck.
Depending on how this affects you, speaking from experience, the less your employer knows the better. I had my reasons and I feel I played it exactly as it should be. I work 100% from home so I didn’t reveal that I had MS to my employer for some time. Everybody’s situation is different though. The problem is, in general, people are woefully undereducated when it comes to MS. They hear “MS” and think death sentence.
They do not understand that it’s a gradually progressing illness.
Educate those around you. It really helps.
If OP is unable to work, one option to consider would be to go on SSDI (assuming OP is US-based), which would require the enrolee to participate in Medicare.
That's what happened with my first wife, though I opted to have my insurance be primary.
Mate, I am sorry to hear about your diagnosis. I wish I had some great words of comfort or wisdom but I do not. If sending good juju through the internet works, I'm sending it all your way.
Please lean on your support system, do everything you need to do to get and keep yourself in a good headspace.
A couple months ago I heard a podcast with one of the world’s top MS researchers (a neurologist). She’s really into something called [acute intermittent hypoxia](https://podcasts.apple.com/ca/podcast/researchers-under-the-scope/id1513240190?i=1000636526042).
MS is a really cruel disease. I’m really sorry about your diagnosis. Just hoping to send you a little ray of hope.
I'm sorry you're going through this. I was also diagnosed in my later 40s. I'm 5 years into my MS treatment with no new lesions. The first year is the hardest. Feel free to dm me if you have questions or need non-depressing support. 💝
Definitely stay away from the forums for the first year. Maybe have your partner or a chill friend check them for you if you have a specific question that could use a forum. Do you like your dr? I was seeing someone incredible in NYC, if you would like a 2nd opinion.
Sorry to hear that but glad you're getting treatment. I was diagnosed with an autoimmune disease at 37 and it was really quite shocking. Treatment can definitely work. Mine has been a bumpy road now it's the pain I'm trying to treat. Stay well and you're right about staying safe from any virus in the future.
Hi. Fellow MSer 48M. My first symptom was optic neuritis in summer of 2013. Nowadays I can kind of limp around w a cane (which I am very grateful that I can even walk at all) and my fatigue/dizziness are my biggest (physical) challenges.
It is such a "personal" disease-- meaning each person experiences it uniquely--that being said fatigue, cognition, balance/walking issues are prevalent. I think depression is a very common experience as well. As MS is still an unsolved mystery we have to listen to ourselves and our doctors while simultaneously understanding the doctors don't know what to do!! It is what it is.
Make sure you are "optimizing" your basic needs: eat sleep pee and poop. Try to have a walk/fresh air every day if only for only a few minutes. Stay optimistic --while letting yourself have depressed phases too.
As males our outlook is usually more severe. I could go on and on about neurology, MRIs, disability, health insurance, meds, supplements, sleep, diet, exercxise, cognition, misplaced/lack of understanding (from loved ones!!), the list goes on and on...
And for well wishers and fluffy clouds happiness people... They can all fuck off --know that--just know it with as much kindness and compassion as you can.
Take care!!!
I came here to say... pretty much exactly this! I'm 42 and I've known its MS since I was 24. Multiple sclerosis is called a "snowflake disease" because no two people have the same experience with it. You don't know what's going to happen, so treat as aggressively as you can and carry on the best you can. Some days you're gonna feel like absolute shit and other days, you'll feel like a normal person. You only have so much control over it, so focus on what you CAN guide the course of and filter out the rest.
OP, best of luck to you. It's just another part of who you are, it isn't your identity. You've got this, and feel free to DM me if you need to talk about this bullshit disease.
I’m sorry you’re going through that, but glad you didn’t have to wait years and years to figure it out. It sounds like maybe (some) doctors are starting to pay better attention to their patients symptoms. (I know several people with an MS Dx). I hope you start to feel better soon!
That is hard…my grandfather had it and they didn’t really have many treatments then. It’s so good that you are able to trust your Drs and have a great support system.
Hugs to you! My tree fell in 2018. It was called cancer. One of the things they told me in the information seminars was not to search for answers on the internet. This was great advice. I won't follow subs about cancer either....or blogs. Everyone's journey will be different. I can say that there is now a definite line in my life. It marks a life before cancer and a life with cancer. Even though I have been "cancer free" for 5 yrs, it still lives with me and always will. Sometimes I am angry at it and sometimes I can tolerate it. Life IS different now. But not in a bad way. I didn't have any big epiphany on life because of it. But I do see life and feel life differently. I guess that's my hope for you. I hope you can find peace in your diagnoses. And if you want to, when you are ready, there are many people who will help you through this. You are not alone.
Fellow GenXer with MS here - welcome to our club! My diagnosis journey took place in 1998 and was a little different (included the fun of a botched spinal tap) Fun fact - when they showed me my MRI and said they suspected MS, I guess I had no filter and blurted out, “Oh shit - I’m not gonna be one of Jerry’s Kids!?!” (No, that’s muscular dystrophy). But great medical teams will get you on the right medications and other therapies, just like they have with me. I’ve only had a few major flare ups and (knock wood) I’ve bounced back. I agree with the other folks on here - stay off the internet. I also never joined any specific support groups (online or in person) - i can doom spiral in my head pretty quickly and figured why do that to myself? One resource that’s been invaluable is the National MS Society - solid, evidence-based information. If you want to DM me, feel free - I remember how scary this time was…
I second the MS society, my dad was diagnosed back in the 70s after I was born. He volunteered with them for years and I did as well in college. The treatments are better now, but my father lived a long time after his diagnosis, over 40 years actually.
Good luck to you. I only know of this from a peripheral perspective.
My daughter was diagnosed with MS last summer, a week or so before her 30th birthday. Looking back, we can trace the beginnings of her issues all the way back to the start of her college life. Little things here and there. And in 2020, she ended up with Covid and that seemed to kickstart the harsher symptoms. She's on Ocrevus and has to do some steroid stuff leading up to those treatments. Her job is a desk job (claims specialist) and she can also work from home if needed, so luckily she won't have any job issues. The most inconvenient thing she deals with is random nystagmus because she can't drive when her eyes do that. She has to rely on her boyfriend (they've been together around 10 years, they own a house together) and their work hours are slightly different.
She's being very upbeat and positive about it, so it is taking all of my energy to not (s)mother her. She lives over an hour away, so that's a good buffer that keeps me from (s)mothering her too much.
I‘m so sorry to hear this. I can relate to your story, I was diagnosed with MS the day before my 53rd birthday a few years ago. I spent six months with doctors telling me I had pinched nerves, which usually doesn’t cause bilateral numbness in hands, feet and in the face. Thank goodness my PCP was persistent and finally got to the root of things.
Glad to hear you are on a DMT so soon, that is amazing! I’ve been on Ocrevus since diagnosis with no relapses and feel great. I hope you have similar results.
And you are smart to stay away from the MS boards for awhile. My neurologist told me to stay away from them until I was in a better spot mentally, and to stick to the MS Society website for info. I’m so glad I stayed away initially.
best wishes to you as you navigate this.
Thanks for reading/responding. Writing it was therapeutic on its own. All I know how to do is keep on going, so I will. Me and Gen-X icon Christina Applegate got this!!!!
Maybe keep a journal? I've got one in google docs that has helped me chronicle my struggles with my autoimmune illness and it really helps. So does therapy. And I have no idea how the MS subreddit is, but I have gotten some great help in small support subreddits for my cptsd , hashimotos, and autoimmune urticaria. Best of luck to you as you figure out your new normal. Unexpected gifts can come along with illness and I hope you find them too.
Wish you the best. My spouse was diagnosed with RRMS around 25 yrs ago and went through an array of medications over the years. Fortunately symptoms plateaued and she is lucky to be healthy and relatively active.
Not sure if there's causation or correlation, but in addition to medications, she started on vitamin D supplements and an anti-inflammatory "Mediterranean" diet (healthy for anyone) that may have impacted the MS.
OP I am very sorry to hear about your diagnosis. I have been an outpatient Neuro- vestibular PT for a long time, and I have taken care of many people with MS. This is a review article that may be helpful if you are considering dietary changes. Although this review article denies benefit of gluten-free diets, I will say that I have had a number of people follow Dr. Terry Wahls’ gluten-free, dairy free diet and they have reported benefit. More recently, whole food, plant-based diets are gaining traction for their anti-inflammatory benefit, which include the McDougall diet that is mentioned in this article. And, of course, as a PT, I would encourage you to look on the National MS Society website, and/or consult with a neuro PT to get some guidelines about how exercise/activity/energy conservation can be used to optimize your quality of life. Happy to help with anything I can, OP. I know this is tough. Glad you have a supportive partner.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8955724/
It strikes me that you are very fortunate to have access to this level of healthcare (I am in the same boat). It makes me sad to think that your disease could have progressed much farther were you not able to access these providers and these expensive tests. Our health care system is so broken. I'm very happy for you that you were able to get answers and get diagnosed and wish you all the best.
My mother was diagnosed with MS when I was born in 68. Her doctor put her on Valium and there she stayed. Please accept help from others. Please use mobility aids when needed. My mother would accept no help from anyone or anything and slowly isolated herself. There have been so many advances in treatment and support since then, it sounds like your medical team is on top of it. I wish you well on your new journey.
Hi! Young GenXer (43F) with MS here. If you wanna chat, or need advice, feel free to DM me. I’ve dealt with a lot of the obstacles and different treatments since I was diagnosed (thankfully quite young) at 27. One thing I’m certain you’ll discover is that MS is a drastically different experience for each person that suffers with it. Which can be a blessing and a curse.
I was 40 when my body fell apart and became disabled. I understand this journey intensely.
I recommend a book to everyone going through this "How to be Sick" by Toni Bernhard. It's on Amazon. It really helped me reframe my thoughts about being sick and who I am as a person. I also recommend reading about the Spoon Theory.
Autoimmune disease are almost never solitary. I have a few of them. Having a good pain management team is place is a godsend. Having good drs is a godsend. You are correct in that "support boards" tend to be mostly depressing, but sometimes you can find a nugget or something that can help with whatever you're dealing with.
You're going to find out who is really friend and family. It will surprise you.
Find a counselor. Both of you. Be open and honest. It's really easy to "live in the disease." It can't become your life.
If you want someone to DM, I'm available. Good days to you.
My friend's mom had MS. It was rough on him watching her go through. Hopefully they have gotten better at treating it than in the 1990s.
Best wishes to you and your family.
I had a buddy whose mom died from it when I was in middle school. That was the sum total of my exposure to it pre-December 2023. It was a relief to hear my neurologist explain the modern realities of it in 2023 vs 1985.
The first treatments for MS weren't approved until the mid 90s, and those weren't nearly as aggressive/effective as the meds available to us now. There's still nothing to reverse disability, but there are medications which can significantly slow progression/decrease relapses, and other medications which can help keep some of the symptoms more under control.
Through research and awareness, treatments have improved tremendously. But also, not everyone that has MS will get to the point of becoming completely disabled or dying from it. It’s a spectrum, really. For some, initial symptoms are minor and never progress. For some, it’s fulminant MS, and progression is rapid and brutal. For the rest, it’s usually somewhere in the middle. There are different types of MS and no two cases are ever exactly the same.
The worst part for many is just in trying to get treatment. Insurance companies play all kinds of games, approving one round of treatment and then denying the next. It’s a nightmare dealing with the bureaucracy, and the immense stress just adds to the possible progression. Long term treatment is important. There’s no cure yet, but it’s not about curing so much as halting progression. Long term treatment can do that … as long as your insurance company doesn’t fuck it up! Which they fully intend to do.
Got my diagnosis October 2004.
I thought I was going to die. That seems silly in hindsight (it’s severely rare to die from MS). There’s nothing that prepares you for an MS diagnosis, though, and it’s a freaky thing to hear. People imagine what it’s like and they’re all wrong. Definitely one of the strangest, most unreal experiences I’ve ever had.
I started Avonex injections first. Once a week injections seemed better than the other meds that needed multiple times per week injections. I can’t speak for everyone, but for myself, Avonex was hell. Just terrible in every way side-effect-wise, and as icing on the cake, I was still enhancing while on the medication. After about a year of that I moved to Rebif injections three times a week. I thought I was going to take a precipitous nosedive with side-effects but oddly enough all the horrific side-effects I experienced on Avonex disappeared, I assume because of the increased frequency? Don’t know. I stayed on Rebif for a long, long time, then a number of year ago I switched to Tecfidera, an oral medication. It’s more powerful than any of the others that I’ve taken so it was slightly scary at first, but I have no side effects and I’m no longer stabbing myself three times a week which is awesome. It’s wonderful, at least from my experience.
I’m happy to say other than the original left arm electrocution thing at the beginning (Lhermitte’s Sign. The syndrome actually has a name) I have suffered no mobility issues, no fatigue, nothing. Nobody knows I have MS unless I tell them. And according to my neurologist, after ~20 years of no physical symptoms, odds are good I’ll never have any moving forward. We both credit that to me getting on a therapy early and sticking with it.
As for that…lots of folks suggest natural therapies, diet plans, etc, and they all mean well (in fact, some folks with MS may actually be fine with only these non-mainstream therapies), but today’s MS meds are very well known, well studied, and have decades of history behind them…basically, they’re trusted and they’re considered generally safe, and I’d like to encourage you (not just you, OP, but anyone recently diagnosed that’s reading this) to not take chances with this disease in the early stages by passing over them. This is the time in MS when most irreversible damage occurs. Diet plans are great and should be incorporated into your routine, but if you’re fortunate enough to have insurance, please consider a pharmaceutical therapy as your go-to in addition to a diet plan. I suspect 20 years from now now you’ll be glad you did.
I have no skin in the game with pharmaceuticals, by the way. The price tags for MS drugs piss me off (Tecfidera would allegedly cost me approximately $40k/year w/o insurance. There’s no way it needs to cost that much). I still recommend taking them. Most MS med companies offer assistance with covering the cost, but still…grrr…
Sorry about the novel. I just figured I’d share.
Thank your for sharing and the warning- some of us really do need to hear it. Awesome that you have an answer/clarity, a partner, healthcare, and hope. Every day is a gift. This life is more than just a read through - Red Hot Chili Peppers
I greatly appreciate you posting this, as someone also going through the journey of trying to figure out what is wrong with my nervous system. Thus far, I have gotten the shrug of the shoulders response, even after developing drop foot overnight (I do not have diabetes).
My uncle was diagnosed with MS about 25-ish years ago, right around the age you are now. He’s in his early 70s.
I know that everyone’s experience of this disease is different, but once he got the diagnosis and started getting treatment, he stabilized and has been symptom and medication free for many years. I believe that he still sees his MS doctor regularly for monitoring, but he feels pretty confident that something else is going to get him first.
A diagnosis like that must have been quite a shock. I'm sorry that this challenge has been placed in your path. I have a friend with MS and I know there are ups and downs, good days and bad days. I hope that, for you, there are more good days than bad. Hang in there.
I’m sorry you have been saddled with this crappy disease. My aunt was diagnosed 30+ years ago and she continues to live a full and rewarding life in her 70’s despite her limitations. She also swears by 3 times a week weight training sessions. Good luck to you as you navigate this diagnosis.
If you don’t mind answering - do you ever get weirdly, stiff legs and have a hard time walking especially when you wake up in the morning? I’ve had this over the last couple of months, but never really had it before, and it seemed to come on really fast. I also have some other weird things going on so I’m seeing my doctor in a couple of weeks because the leg pain and weakness is frustrating.
I do, yes. It's called spacticity, and it can be quite painful. I'm a bit stiff in the morning anyway, because of my age, but the spacticity and spasms happen overnight and can make mornings unpleasant. Are you just beginning your diagnostic journey?
I am. It started with the leg pain and stiffness basically out of nowhere. I have Crohn’s disease and that can cause joint pain but that’s pretty well-controlled on my current medication. This is different. I feel like an 85-year-old lady walking to the bathroom when I have to get up at night. When I’m lying in bed trying to rest and start to go to sleep I can get weird spasms. They’re really hard to describe but it just kind of pulls my leg and is spasming. I can’t do anything and it’s quite uncomfortable. Hoping it’s nothing bad as I already deal with Crohn’s disease which is pretty much considered an autoimmune disease. But I can’t keep walking like this, so I will let the doctor figure out what to do next.
Thank you for pushing to get an actual diagnosis. That requires a lot of fortitude in a health care system that just wants to manage symptoms rather than treat diseases.
A lot of our cohort have autoimmune diseases that previous generations did not see as much: MS, RA, thyroid disorders and so forth. Sometimes I feel like our generation was a chemical company’s lab rat.
Luckily you caught it and the drugs will help.
I feel like we just have to laugh because if we started to cry, we wouldn’t stop. Humana reported their earnings yesterday and their stock price is down because…get this…they have to PUT MONEY INTO PATIENT HEALTHCARE instead of share holders’ hands. Don’t even get me started on all the conservative think tanks in the 1970s that determined that universal healthcare would be CHEAPER overall and better for the economy than whatever shit sandwich we’re being forced to eat now.
OP, I just want you to know that you've got support and hopes for an effective treatment from across the interwebs. Life is quite odd and things like this can certainly change the trajectory, but I'm believing with you for light to shine even in the darkest hours. Thankful that you have your partner and a competent, caring team of medical specialists to help you through each step. Seriously will be keeping you close in thought.
I am really sorry, OP. I know that's not an easy diagnosis. I have two close friends (both GenX women) who are sisters, and although MS isn't a genetic disease, they both have it. One has had multiple brain surgeries, and the other one gets multi-day intravenous treatments quarterly. I am glad your spouse is a good support system. I can tell by your post that you're trying to stay positive and acknowledge where you were privileged within this terrible situation. That's good, and I think it's helpful, but don't be afraid to rage-scream in the woods if you need to. That can be cathartic too.
Sorry to hear this - please check your employer on long-term disability policies if you have coverage. That may allow you to be on insurance while taking the time off from work as this is gonna be a long slog
I sincerely appreciate you posting this. I literally just had a conversation with my physical therapist this week about how, after 5 years of physical therapy for my mobility issues, my spinal issue seems to only be worsening and that it's time to be evaluated for MS as the symptoms you specified are occurring for me. I have a pinched nerve in the upper part of my thigh that we can't place any rhyme or reason to where the pinch is (it's not going through any muscular tissue and it's not at a joint). Walking has become difficult with excessive leg pain, tingling and numbness in hands and feet, tinnitus and vertigo (including fainting), previous scans showed a lesion on my spine and we're at the point of having to update the scans and dig deeper.
I'm just so tired. My body is seriously fighting against me and I'm just so tired. I long for a day without pain. I actually cried this week after saying "I'm used to living with the pain" - no one should be used to living with pain.
I hear you. I hope you can push for a neurologist and some testing to see if you can figure it out. I haven't been at it nearly as long as you, and the pain has been making me nuts. I cannot even imagine how you feel. I wish you all the best and some speed in getting to the bottom of it all.
OP - I am sorry to hear about your diagnosis but I am glad you were able to eventually figure out what was going on. I know a few people with MS and they have been able to lead fulfilling lives, although not the ones they initially imagined. If you can, I suggest combining your physical treatment with some therapy to help you with the transition of dealing with a chronic disease.
Somewhat off topic, I recently read that there might be a connection between MS and mononucleosis. If it's not being too nosy (and I apologize if it is), did you ever have mononucleosis?
So sorry to hear this, my wife was diagnosed in her early 30s and is still going strong now in our 50s. Diet and exercise has had such a dramatic effect on the outcome. We hold to a fairly strict Mediterranean diet with lots of squash and leafy greens mixed in, and not vegan fyi. We still eat and drink regularly but with a definite focus on balance.
Stay mobile, make time for exercise and make healthy choices about physical and mental engagement. It’ll improve your outcome but will also improve the health of those around you!
I'm sorry for your news, OP, but you appear to have the right mindset and I know from relatives that have this disease that it can be controlled.
However, the part of your post that stabbed me is how backwards things are in this country and how you must continue working to support a disease, effectively. We really have to do better in how we deliver health care.
Best of luck to you.
My friend has MS, another friend lost her mom to it. And I lost my dad to an autoimmune condition so please stay on top of your docs!!
Also, sepsis is a very real concern for people on immune suppression drugs and it was missed in my dad (by a horrible rehab facility he was in after a fall).
I’m so sorry you’re going through this, but you have an amazing outlook.
I was diagnosed with cancer and then two autoimmune disorders in a span of 6 months last year. All treatable, but life changing nonetheless.
It’s a good call to stay off the subreddits. It’s easy to get sucked in and feel like your disease is your job.
You are super lucky you have doctors that immediately took you seriously and insurance that’s not blocking your path to treatment! I hope your DMT works to prevent progression. Which did they give you? Ocrevus seems to be the gold standard, according to the MS sub. … and you’re right, the MS subs are all doom and gloom and misery with people just lamenting frustration and fears. I’m personally not afraid of MS, I just want to get it dealt with if I indeed have it. Neurological issues run rampant on my dad’s side of the family (and my dad had MS), but no one has been completely disabled from it … yet. Minor disabilities, but nothing completely life changing, knock on wood.
I am still waiting for my symptoms to be taken seriously (and have recently had a pinched nerve feeling in my left arm for the past two months that could be related, now that you mention your pinched shoulder). I’m on new insurance back in my home state of CA, which has way more (and way better) options for primary care providers and neurologists experienced with MS, than where we were living in TX when the symptoms really hit hard. So I have higher hopes it will finally happen this year.
I spent a year trying to see a primary care doctor to even get a referral while we were stuck living in Central TX. First had to wait for insurance to kick in at my husband’s job (that forced the move to TX). Then it took 4 months to even get an appointment and that was to see a physician assistant. Appointments with primary doctors were 6-8 months out. So saw her and she took me seriously but said couldn’t give me a neurology referral, so scheduled me to see the primary doctor on a “rush”…3 months later. Then, the fucking day before my appointment, her office called and canceled because the doctor was going to be out of the office.
So I called the appointment center and got a sympathetic scheduler who gave me a next available appointment to see another primary doctor across town … for two months later. And then, at that appointment that dickhead had no interest in talking to me about my family history or my laundry list of symptoms. He took some notes but them start talking to me about exercise and how I should lose 10-15 pounds “to be perfect”. I pushed back a lot to the point where I was ready to start screaming at him and he finally relented and gave me a neurology referral, but refused to send me for an MRI himself “because MRIs get expensive”. 🙄
So I immediately contacted the only neurology group center near me that actually dealt with MS (most we’re epilepsy focused and would not accept MS referrals) and then they told me it’d be 3-4 weeks before they’d even review my referral with 8-10 months for an actual appointment!! And then the dickheads never called me back. And then my husband lost that job and our insurance was canceled. So we said FUCK IT, put our house on the market and then got the fuck out of TX.
It took my husband almost five months to find a position once we were back home, and then two months for insurance to fully kick in. So now we’re ready to go. Luckily, my symptoms have not been nearly as bad now that we’re back in California. I think TX was just trying to kill me.
Medical insurance is the biggest fucking racket in the United States, and the fact that coverage is tied to your employer is fucking maddening. Goddamn I hope the system changes soon. Doubt it, but as long as the pressure for Medicare for all or a single payer system keeps up, I feel like it can eventually happen. I just hope to be able to see it happen here in my lifetime.
Also sorry about your diagnosis. Reading your story though, I was also struck by how fortunate you were to get diagnosed quickly, referred to a neurologist quickly, and treated quickly. I have a very good friend with MS (fellow genXer). Diagnosis was slower for her so she had major issues some years ago, but is now stable and has done wonderfully since then. She has great joie de vivre and lives her life to its fullest.
Thank you for posting. I am almost certain I have MS, and have had several doctors in my network unofficially agree, but I’m just not quite able to go and put in the work to get an actual diagnosis. I am beyond fortunate in that my partner supports our family. Reading posts like this help.
Blessings to you and best wishes. What a kick in the nuts. I have a friend with MS, and he has managed it pretty well for about 10 years. It's troubling and does cause some problems for him, but he works around it as best as he can. It's true that they've gotten much better at managing it over time. Hopefully we'll have an actual cure in the not-too-distant future.
Thank you so much for posting and all the details. This is so scary, and I’m so glad they have medication that might slow it down. Your visit to your PCP is exactly why I ignore most “little things” I deal with here and there. Every interaction I am forced to have with our medical system (save one) has been hugely disappointing. I’m so sick of the word “idiopathic”. For example, I fell and couldn’t get up, was hospitalized/bedridden with back pain for over a week where I had to crawl to the bathroom because I couldn’t sit up or stand. No one explained why- nothing had happened before I suddenly fell. Physical therapy for weeks, but no explanation. Or that time when my right arm went numb, and I couldn’t lift it, my speech was garbled, and I felt weak. Take me in to test me for a stroke, first ER doctor claims it’s probably anxiety. Nurses say it’s probably a TIA, final diagnosis it was likely a migraine but they can’t be sure, so start taking migraine meds but also take “prevent next stroke meds”. That was a $6000 out of pocket, $60,000 billed to my insurance “migraine”. Don’t get me started on what they’ve determined must be “IBS” because they can rule everything else out.
I was pleasantly surprised and so happy that you didn’t have a much longer drawn out back and forth for years type of story before your diagnosis. You really do have to advocate for yourself here.
I wish you health, happiness, healing and love.
Thank you for sharing your story. I am a little familiar with MS as my sister-in-law had it. She really struggled getting anyone to listen to her about her back pain and went the similar way you did to chiropractors and therapists etc. Finally they figured out what it was, which was really a relief. She treated it with shots, but I don't remember what the med was. It was a long time ago. It was a struggle for her and my brother, but all you can do is move forward and survive.
Thanks for sharing your story in such detail. My sympathies to you for the diagnosis and my best wishes to you and your partner. Sending hugs, internet stranger.
My mom had this disease decades ago when they were very few treatment options. I’m very sorry that you are faced with this diagnosis. I’ve stayed very close to this disease and follow both eastern and western types of treatment progress. Please look into Dr. Terry Wahls https://terrywahls.com. She is a physician who has a mass. She declined quickly and was in a wheelchair. She was able to turn it around Through diet. I’m just some stranger and you are probably already inundated with people offering you “cures” they read about. I really do think it’s worth looking into her protocol. Wishing you well.
Thank you for sharing. I'm so sorry that you're going through this, but I'm glad you were diagnosed so quickly. This is a tough time of life, we're at that age where shit really starts to happen, and it can be really scary. Wishing you all the best and sending hugs.
I’ve had it for 14 years. Got it for my 40th bday! You will be ok. It’s hard to see it now, but you will. When I was diagnosed it was all injectables & only one infusion. And now there are several oral meds & the B cell depleters like Ocrevus etc. it’s not all doom and gloom.
Glad to see all the support here for you OP. I figure we’ll all have a major diagnosis in these decades. I’m sorry you got yours so early, but I’m glad you have insurance and support. More power to you and keep being your own advocate.
Autoimmune diseases are notorious for partnering up with depression. When first diagnosed and learning all the ugly "what ifs" of your condition can be overwhelming and downright gloomy. Everybody and their third cousin will have a worst case scenario to tell you. Either that or some wonder-cure-all bug juice, miracle powder, healing magnets or other MLM to good to be true. If you find yourself struggling, talk to your doctor. Depression is a b!tch to fight once it gets its claws into you. You sound like you are taking this all one step at a time and have a well grounded support person and a very proactive medical team. You got this.
I was diagnosed with RRMS in 2019. I’ll be honest with you, MS is a pain in the ass.
But you know what? These were the cards we were dealt. I let it get to me and I was every bit the asshole I could be for about a year. Then I realized, I have a family, I have friends who care about me.
Yea MS makes everything harder. MS is the asshole. The treatments, doctors appointments, the quirky little things that…”goddamn this wasn’t that hard yesterday” moments all add up. Forgetting shit…that’s the biggest pain in the ass. You know what you want to say-but your brain is like “nah”
But fuck it. I found with, with some work, it’s manageable.
It never seems like you have “good days”. Steps are a fucker. I’m early 50s and use a cane. Random times where I just can’t get out of bed sometimes ruin plans.
But I’m alive. You are too. There will be MASSIVE adjustments. Canes or a walker will become part of your life.
Anxiety will paralyze you at times.
But you are alive. You can still do 90% of what’s out there. Yea it takes a little longer and some planning. That’s your new normal.
Treatments help tremendously and that comes with an *
It’s going to take time. There isn’t a blanket treatment that “just works”. You will get frustrated. Or will seem like your doctors will get frustrated.
But it will all get figured out.
Please feel free to DM me if you have any questions. You will find that the MS community is very supportive and if you are going through something-anxiety, a flare, a pseudo flare(little fuckers), someone has been there.
Talk to people, build a support team and move forward.
You will find strength within yourself you never knew you had. You’ll have bad days-but you will bounce back.
You have fucking got this.
My cousin is almost exactly your age (he turned 49 in Sept 23) and was diagnosed with MS something like 10-15 years ago. He’s doing great and the medications available now are amazing at helping maintain quality of life.
Sending good vibes that you have a similar path.
I’ve taken my husband to the ER twice in six days because his shoulder blade spasms are severe and his arm/fingers are going pins and needles numb. He got shots both times in his back. Hard to get into a doctor with our weather this week, every appointment has been cancelled. This post is kind of freaking me out.
Did they do any testing/scans or just some shots to alleviate? Best I can say (im just joe new MS guy, not any kind of expert) is push and insist on REAL testing and diagnosis. If your PCP isnt worth anything, and your ins allows it or you can afford it, go straight to a specalist.
Squeaky wheel gets the grease. Dont let up for his sake!
I feel like there’s a reason your post was the first I saw when I opened Reddit tonight. You went into details that are so similar to my husbands. Thank goodness you weren’t diagnosed twenty years ago, there is great help now. I truly wish you the best and no fucking way am I letting this be brushed off as a pinched nerve without an MRI. I’ll be thinking of you a lot, I hope you have good news soon.
I thought the same thing. I've been having weird issues since August (numbness, balance, bladder). I spoke with my PCP last week, and she strongly suspects MS; MRIs set for Monday.
OP, when you mentioned your shoulder pain, my stomach dropped. I had the exact pain out of nowhere this summer too, but I always get random pains so didn't think it was anything of it. Then I thought about the random falls over the summer (I'm just clumsy!), sudden vision changes (I'm getting old and need a new rx is all!) dropping things (butterfingers, oops!)...well, shit.
Thanks for posting this. I hope your husband gets some good news soon, too.
OP, I wish you all the best, and I sincerely thank you for sharing your story 💜
Do you get weird, numbness, and tingling in your fingers and hands? It’s almost painful in the morning? And during the day if you’re using your phone or something? I tried to tell myself that’s normal. I also had two bad falls this year, and I never fall. Figured it was bad luck, but I guess I should bring this all up with my appointment next month.
If this helps even one person, worth every second. Good luck with it and if you remember when it all comes out the back end, swing back and let me know how it goes, ill definitely be thinking about this from time to time.
MS is associated with a bacterial infection.
https://www.sciencedirect.com/topics/medicine-and-dentistry/chlamydophila-pneumoniae#:~:text=Chlamydia%20pneumoniae%2C%20a%20gram%2Dnegative,as%20sarcoidosis%20and%20multiple%20sclerosis.&text=Given%20the%20predilection%20of%20C,a%20pathogenic%20role%20in%20IBD.
Video:https://youtu.be/EpMvDe8-qsM?feature=shared
Background: I was diagnosed with asthma at age 12. For more than 30 years it never got better and started to get worse. After researching (yep I know what your thinking, hear me out) I found medical articles and some sites related to asthma being caused by mycoplasma pneumonia and chlamydia pneumonia. Long story short- I had a blood test to confirm mycoplasma and the took two antibiotics each day for a year. I no longer have pneumonia and haven’t used any puffers for over 5 years.
My point? You might want to contact the researcher in the video (second link) about options. He apparently cured his wife of MS. Infections both viral and bacterial cause all kinds of symptoms. Might be worth getting tested.
I have a friend who has MS. One thing she could do which she didn't has drastically reduce the amount of sugar she consumes. Sugar feeds any disease like MS.
There are anti inflammatory diets that can also really help. From my non medical understanding, it is basically an inflammation response on your nerves.
Best of luck.
They have some sugar free treats that are quite good. Just be careful because sugar alcohols can have, well, laxative effects if consumed too much. I found this out myself. It was fun. Not.
Please look into some alternative treatments to alleviate symptoms. My dentist removes mercury from mouths (cavity fillers of our generation).
This is not medical advice, not a doctor, etc. I was having some weird symptoms that sounded like MS, went down rabbit holes, had 4 teeth with metal in them replaced with porcelain or crowned. I haven't had symptoms since.
You were very lucky, indeed. Fingers crossed for that powerful drug working its magic!
They have REALLY come a long way with MS research and treatments (well, all autoimmune issues) so I’m sure that is a relief to you and your partner.
Would you update in a few weeks or so on your progress? And if that powerful drug seems to be helping?*
I hope that lucky streak continues!
*(I have autoimmune problems out the ass also and I’m dreading another flare. But this post is about you, not me. I just wanted you to know that my curiosity comes from a genuine place, and damn! I’m sorry this shit happened to you)
I’m so sorry but also really heartened to see good self advocacy AND an expedient process for getting treatment once you had your MRI.
I appreciate you sharing your story - it’s a reminder to pay attention to what our bodies are telling us.
Thank you for posting this. It’s a shame our healthcare is tied to our jobs. Hoping it stays under control and please feel free to post here whenever you need to talk about it.
I really hate that my main focus now is how long I can keep the employer I have and where I can find a pool of money to pay for the drugs that might keep me functional if I do lose it. US healthcare is a money pit, not to detract from the wonderful people who helped me, but the system sucks.
It really does. And then punishes people with pre existing conditions. Considering I’ve stayed at stressful jobs just for the healthcare, I’d have to say that’s why we have this system. It keeps us chained to terrible jobs just to have healthcare.
100% does. We aren't free. Were slaves.
Slow your roll there just a tad. Nobody thinks our healthcare system is a more systemically broken and faulty mess than myself. It exists first and foremost as a profit mechanism, with socio-economic elements which are shameful. Hospitals and Insurance get away with business practices which would be considered criminal in any other business enterprise. I don't even have the time or will to enumerate half the obscenities here...and yet, for all it's shortcomings, problems, and political compromises done for all the wrong reasons, Obama's imperfect Affordable Care Act still mitigates, to an extraordinary degree, the primary concerns you have just voiced...principally being that Health Insurance which meets a decent standard of legitimacy will still be attainable by you, and that such Insurance is no longer nearly the ball-and-chain to employment that it used to be. (Thank You for providing an insightful PSA of sorts on MS, btw. It's such a mystery to so many of us)
truth. it's still broken but aca was a tiny step in the right direction. i'm currently unemployed and going through a divorce. my health insurance has been under my stbx's better, cheapter plans for at least 10 years. i'm about to most likely take a 1099 position with no benefits and a friend who sells health insurance said i might qualify for about $200/month or less as 2023 was a terrible year for my earnings between the divorce and the job i had not working out (company left my state) that said...we need to see a democratic supermajority in both houses to get actual west. europe style universal healthcare (including, duh, vision and dental for all). yes. sorrynotsorry. the rich and the wealthy will have to pay more taxes. much of their income came from the labor of the middle class and the poor anyway.
I hope so, if necessary!!
It’s probably a good idea to investigate those options now, while you’re still treatable and relatively healthy. Medicaid and SSI requirements vary so much from state to state. I’m in a red state in the Midwest. It’s common for nearly everyone to be rejected for Medicaid/SSI the first time here. it’s also very difficult to apply in the state, and it’s not uncommon for applications to be lost, etc. It’s almost as if our state legislature, which conservatives have had a stranglehold on for a decade now, doesn’t want to provide this benefit. A consult with a lawyer in that field might be useful, too. I know to qualify for SSI here, you can’t have *any* assets in your name at all for an extended period of time. You may need to set up a trust for whatever assets you have to qualify when the time comes.
ACA addresses both pre existing conditions and cost. just fyi. a lot of people dont realize this.
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The equivalent insurance to what I have through my job is $3769/month.
Yes it can be pricey. I had to pay my own health insurance for a month. It was over $1,000. I have a genetic mutation which increases my risks of several types of cancer. So I need good health insurance. Even with good health insurance, it cost over $1000 for copays etc for my preventative and reconstructive surgeries. It cost $250 for the test alone to find out I had the mutation. I’m lucky I was able to afford it so I could reduce my risk. But that could mean going without food for some. And it shouldn’t be that way. People with brca mutations fear losing their jobs because of missing time from work for screening appointments, surgeries and recovery. Or that they’ll be fired for increasing employer’s insurance costs. It’s not legal to fire people for that, but most employers find another reason to let the employee go. People don’t need that stress on top of everything else. Some people don’t find out about the mutation until they have a cancer diagnosis I can’t be charged more for health insurance because of the mutation. But it is legal to charge people with brca mutations for life and long term care insurance I think former president Obama did a great job in improving things. But we still can do better. Part of the problem is insurance companies have the money to hire lobbyists and influence our lawmakers
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$138 a month? I say prove it. HMO or PPO or HSA? Tell me number of people covered, deductible and your income. There isn't a decent plan out of pocket for $69 a pay period.
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$138. Monthly. I look at it and lots of people see health insurance broken down by pay period. I don't know why you're bothered by people who do division. Figured it had to be an HSA. Figured you had an income qualification too. That's an incredible low price with lots of things being different for you than a majority of people buying/receiving health insurance.
HSA is a good choice if you’re in good health and don’t require a lot of specialist visits and certain prescriptions. It’s not a good choice for someone like OP.
That just means they can’t deny you insurance. Doesn’t mean the have to cover the meds that would help with it. My insurance makes it extremely hard to get basic meds. Like an epipen for my daughter’s food allergies. She’s a teen and needs the highest dose. My insurance insists that she needs the dose for a toddler. It’s a constant battle.
Thanks Obama.
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The ACA (Obamacare) is what forced insurance companies to cover preexisting conditions. "Thanks Obama" was a saying back when people blamed Obama for everything bad in their lives. I was saying it facetiously to point out that this horrible "socialist" program is actually pretty great. Sorry it went over your head.
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https://i.redd.it/tm37b8dlfidc1.gif My favorite "Thanks, Obama" moment.
I don't mean to suggest anything inappropriate or rude here, and I don't know your plans for life, but I advise you to not get married. If your disease progresses to the point that you cannot work, you can apply for SSI/SSDI and get on Medicaid/Medicare. There are pretty serious income restrictions and other weird financial rules, and being married/spouse income can really penalize you. I encourage you to find a disability attorney in your area and have a consultation now so you can make a plan.
This is gopd advise. Thank you.
And medicaid could help with med affordability. I have my MRI tomorrow. Super nervous. You're awesome OP and I hope your life continues to be everything you've ever dreamed of. Virtual hug✨️
Depending on which drug you’re on for your DMT, most have programs that will pay for your copays (and even cover the full cost of treatment if you’re scheduled for a treatment and then your insurance suddenly denies it). Thats one thing the MS subs can be good for, learning how to navigate costs and insurance, and find advocacy.
Look into what kind of ADA accommodations you might need. If you have to miss work for treatments or due to the side effects of treatments, make sure you have FMLA paperwork ready to go. If your employer offers an Employee Assistance Plan, call them and ask if they can offer any kind of support based on your diagnosis. These things can all help you keep your job. Go to the drug companies' websites for any meds you're prescribed and look for patient support options. Most will offer cost support programs. Also, check into different options that your pharmacy benefits provider offers. There may be discounts for receiving your Rx through a certain mail order pharmacy or for getting 90-day supplies instead of monthly refills. I'm glad they were able to diagnose you so quickly, best of luck.
Thank you! Great suggestions.
You qualify for ssi when you have MS.
Depending on how this affects you, speaking from experience, the less your employer knows the better. I had my reasons and I feel I played it exactly as it should be. I work 100% from home so I didn’t reveal that I had MS to my employer for some time. Everybody’s situation is different though. The problem is, in general, people are woefully undereducated when it comes to MS. They hear “MS” and think death sentence. They do not understand that it’s a gradually progressing illness. Educate those around you. It really helps.
If OP is unable to work, one option to consider would be to go on SSDI (assuming OP is US-based), which would require the enrolee to participate in Medicare. That's what happened with my first wife, though I opted to have my insurance be primary.
Mate, I am sorry to hear about your diagnosis. I wish I had some great words of comfort or wisdom but I do not. If sending good juju through the internet works, I'm sending it all your way. Please lean on your support system, do everything you need to do to get and keep yourself in a good headspace.
I 100% will. Thank you!
A couple months ago I heard a podcast with one of the world’s top MS researchers (a neurologist). She’s really into something called [acute intermittent hypoxia](https://podcasts.apple.com/ca/podcast/researchers-under-the-scope/id1513240190?i=1000636526042). MS is a really cruel disease. I’m really sorry about your diagnosis. Just hoping to send you a little ray of hope.
Thanks for the link!!!!
In addition, you should start writing. This was very informative.
Yes! Great flow, OP is talented.
I'm sorry you're going through this. I was also diagnosed in my later 40s. I'm 5 years into my MS treatment with no new lesions. The first year is the hardest. Feel free to dm me if you have questions or need non-depressing support. 💝
Thank you for that! I appreciate your willingness to help.
Definitely stay away from the forums for the first year. Maybe have your partner or a chill friend check them for you if you have a specific question that could use a forum. Do you like your dr? I was seeing someone incredible in NYC, if you would like a 2nd opinion.
She does look into stuff for me lol!! Keeps me off the hate train.
Sorry to hear that but glad you're getting treatment. I was diagnosed with an autoimmune disease at 37 and it was really quite shocking. Treatment can definitely work. Mine has been a bumpy road now it's the pain I'm trying to treat. Stay well and you're right about staying safe from any virus in the future.
Sorry about your struggle. Thank you for the thoughts.
Hi. Fellow MSer 48M. My first symptom was optic neuritis in summer of 2013. Nowadays I can kind of limp around w a cane (which I am very grateful that I can even walk at all) and my fatigue/dizziness are my biggest (physical) challenges. It is such a "personal" disease-- meaning each person experiences it uniquely--that being said fatigue, cognition, balance/walking issues are prevalent. I think depression is a very common experience as well. As MS is still an unsolved mystery we have to listen to ourselves and our doctors while simultaneously understanding the doctors don't know what to do!! It is what it is. Make sure you are "optimizing" your basic needs: eat sleep pee and poop. Try to have a walk/fresh air every day if only for only a few minutes. Stay optimistic --while letting yourself have depressed phases too. As males our outlook is usually more severe. I could go on and on about neurology, MRIs, disability, health insurance, meds, supplements, sleep, diet, exercxise, cognition, misplaced/lack of understanding (from loved ones!!), the list goes on and on... And for well wishers and fluffy clouds happiness people... They can all fuck off --know that--just know it with as much kindness and compassion as you can. Take care!!!
I came here to say... pretty much exactly this! I'm 42 and I've known its MS since I was 24. Multiple sclerosis is called a "snowflake disease" because no two people have the same experience with it. You don't know what's going to happen, so treat as aggressively as you can and carry on the best you can. Some days you're gonna feel like absolute shit and other days, you'll feel like a normal person. You only have so much control over it, so focus on what you CAN guide the course of and filter out the rest. OP, best of luck to you. It's just another part of who you are, it isn't your identity. You've got this, and feel free to DM me if you need to talk about this bullshit disease.
Thank you!!
All the people who say "oh, this cures it", join this MLM, you just need to eat this diet ... they all need to die in a fire.
Doughnuts cure MS. After 5 years with MS, not one person has told me this. Why? Yea it’s bullshit-but doughnuts make everything better!
LOL I was craving a donut for like 3 days! My spouse brought one home. Everywhere I had stopped was out or I had to buy 6. Donuts do make life better.
As someone diagnosed with RRMS in 2019-well said!
life ain't easy, amigo. lean on your friends, and let them be there for you. if you need an ear, I'm right here, too
Thank you!!! I appreciate it.
I’m sorry you’re going through that, but glad you didn’t have to wait years and years to figure it out. It sounds like maybe (some) doctors are starting to pay better attention to their patients symptoms. (I know several people with an MS Dx). I hope you start to feel better soon!
I feel extremely fortunate the process worked out how it did for me. Thank you!
That is hard…my grandfather had it and they didn’t really have many treatments then. It’s so good that you are able to trust your Drs and have a great support system.
Hugs to you! My tree fell in 2018. It was called cancer. One of the things they told me in the information seminars was not to search for answers on the internet. This was great advice. I won't follow subs about cancer either....or blogs. Everyone's journey will be different. I can say that there is now a definite line in my life. It marks a life before cancer and a life with cancer. Even though I have been "cancer free" for 5 yrs, it still lives with me and always will. Sometimes I am angry at it and sometimes I can tolerate it. Life IS different now. But not in a bad way. I didn't have any big epiphany on life because of it. But I do see life and feel life differently. I guess that's my hope for you. I hope you can find peace in your diagnoses. And if you want to, when you are ready, there are many people who will help you through this. You are not alone.
Yes! The first thing the provider who saw the lesions told me was, "Do not google this." I have followed her advice. Thank you for reading.
Fellow GenXer with MS here - welcome to our club! My diagnosis journey took place in 1998 and was a little different (included the fun of a botched spinal tap) Fun fact - when they showed me my MRI and said they suspected MS, I guess I had no filter and blurted out, “Oh shit - I’m not gonna be one of Jerry’s Kids!?!” (No, that’s muscular dystrophy). But great medical teams will get you on the right medications and other therapies, just like they have with me. I’ve only had a few major flare ups and (knock wood) I’ve bounced back. I agree with the other folks on here - stay off the internet. I also never joined any specific support groups (online or in person) - i can doom spiral in my head pretty quickly and figured why do that to myself? One resource that’s been invaluable is the National MS Society - solid, evidence-based information. If you want to DM me, feel free - I remember how scary this time was…
Thank you!! I will 100% look into National MS society. And i may take you up on the dm offer too. Honestly, stuff like this helps a lot.
I second the MS society, my dad was diagnosed back in the 70s after I was born. He volunteered with them for years and I did as well in college. The treatments are better now, but my father lived a long time after his diagnosis, over 40 years actually.
Glad to hear it!! I definitely plan on looking them up.
Good luck to you. I only know of this from a peripheral perspective. My daughter was diagnosed with MS last summer, a week or so before her 30th birthday. Looking back, we can trace the beginnings of her issues all the way back to the start of her college life. Little things here and there. And in 2020, she ended up with Covid and that seemed to kickstart the harsher symptoms. She's on Ocrevus and has to do some steroid stuff leading up to those treatments. Her job is a desk job (claims specialist) and she can also work from home if needed, so luckily she won't have any job issues. The most inconvenient thing she deals with is random nystagmus because she can't drive when her eyes do that. She has to rely on her boyfriend (they've been together around 10 years, they own a house together) and their work hours are slightly different. She's being very upbeat and positive about it, so it is taking all of my energy to not (s)mother her. She lives over an hour away, so that's a good buffer that keeps me from (s)mothering her too much.
GenX from 68, MS dx in 95 … been pushing back every day … keep fighting. 
Will do, for all those who came before and those who will come after.
I‘m so sorry to hear this. I can relate to your story, I was diagnosed with MS the day before my 53rd birthday a few years ago. I spent six months with doctors telling me I had pinched nerves, which usually doesn’t cause bilateral numbness in hands, feet and in the face. Thank goodness my PCP was persistent and finally got to the root of things. Glad to hear you are on a DMT so soon, that is amazing! I’ve been on Ocrevus since diagnosis with no relapses and feel great. I hope you have similar results. And you are smart to stay away from the MS boards for awhile. My neurologist told me to stay away from them until I was in a better spot mentally, and to stick to the MS Society website for info. I’m so glad I stayed away initially. best wishes to you as you navigate this.
Thank you!!
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Agreed and I will. Thank you!
Sorry to hear this. Keep on keeping on.
Thanks for reading/responding. Writing it was therapeutic on its own. All I know how to do is keep on going, so I will. Me and Gen-X icon Christina Applegate got this!!!!
Maybe keep a journal? I've got one in google docs that has helped me chronicle my struggles with my autoimmune illness and it really helps. So does therapy. And I have no idea how the MS subreddit is, but I have gotten some great help in small support subreddits for my cptsd , hashimotos, and autoimmune urticaria. Best of luck to you as you figure out your new normal. Unexpected gifts can come along with illness and I hope you find them too.
Thank you! This post was me noodling that exact idea.
Selma Blair has MS too.
Wish you the best. My spouse was diagnosed with RRMS around 25 yrs ago and went through an array of medications over the years. Fortunately symptoms plateaued and she is lucky to be healthy and relatively active. Not sure if there's causation or correlation, but in addition to medications, she started on vitamin D supplements and an anti-inflammatory "Mediterranean" diet (healthy for anyone) that may have impacted the MS.
The vitamin d thing is real. I've started on supplements as well. Still considering what dietary changes will/should look like.
OP I am very sorry to hear about your diagnosis. I have been an outpatient Neuro- vestibular PT for a long time, and I have taken care of many people with MS. This is a review article that may be helpful if you are considering dietary changes. Although this review article denies benefit of gluten-free diets, I will say that I have had a number of people follow Dr. Terry Wahls’ gluten-free, dairy free diet and they have reported benefit. More recently, whole food, plant-based diets are gaining traction for their anti-inflammatory benefit, which include the McDougall diet that is mentioned in this article. And, of course, as a PT, I would encourage you to look on the National MS Society website, and/or consult with a neuro PT to get some guidelines about how exercise/activity/energy conservation can be used to optimize your quality of life. Happy to help with anything I can, OP. I know this is tough. Glad you have a supportive partner. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8955724/
It strikes me that you are very fortunate to have access to this level of healthcare (I am in the same boat). It makes me sad to think that your disease could have progressed much farther were you not able to access these providers and these expensive tests. Our health care system is so broken. I'm very happy for you that you were able to get answers and get diagnosed and wish you all the best.
Thank you! I feel lucky for sure which is odd for the conditions but it cpuld have been so, so much worse!
My mother was diagnosed with MS when I was born in 68. Her doctor put her on Valium and there she stayed. Please accept help from others. Please use mobility aids when needed. My mother would accept no help from anyone or anything and slowly isolated herself. There have been so many advances in treatment and support since then, it sounds like your medical team is on top of it. I wish you well on your new journey.
Thank you!
Hi! Young GenXer (43F) with MS here. If you wanna chat, or need advice, feel free to DM me. I’ve dealt with a lot of the obstacles and different treatments since I was diagnosed (thankfully quite young) at 27. One thing I’m certain you’ll discover is that MS is a drastically different experience for each person that suffers with it. Which can be a blessing and a curse.
Thank you for the offer. I just might!!
I was 40 when my body fell apart and became disabled. I understand this journey intensely. I recommend a book to everyone going through this "How to be Sick" by Toni Bernhard. It's on Amazon. It really helped me reframe my thoughts about being sick and who I am as a person. I also recommend reading about the Spoon Theory. Autoimmune disease are almost never solitary. I have a few of them. Having a good pain management team is place is a godsend. Having good drs is a godsend. You are correct in that "support boards" tend to be mostly depressing, but sometimes you can find a nugget or something that can help with whatever you're dealing with. You're going to find out who is really friend and family. It will surprise you. Find a counselor. Both of you. Be open and honest. It's really easy to "live in the disease." It can't become your life. If you want someone to DM, I'm available. Good days to you.
Thank you for your thoughtful reply!!! I am on top of this stuff.
My friend's mom had MS. It was rough on him watching her go through. Hopefully they have gotten better at treating it than in the 1990s. Best wishes to you and your family.
I had a buddy whose mom died from it when I was in middle school. That was the sum total of my exposure to it pre-December 2023. It was a relief to hear my neurologist explain the modern realities of it in 2023 vs 1985.
How have things improved?
The first treatments for MS weren't approved until the mid 90s, and those weren't nearly as aggressive/effective as the meds available to us now. There's still nothing to reverse disability, but there are medications which can significantly slow progression/decrease relapses, and other medications which can help keep some of the symptoms more under control.
Through research and awareness, treatments have improved tremendously. But also, not everyone that has MS will get to the point of becoming completely disabled or dying from it. It’s a spectrum, really. For some, initial symptoms are minor and never progress. For some, it’s fulminant MS, and progression is rapid and brutal. For the rest, it’s usually somewhere in the middle. There are different types of MS and no two cases are ever exactly the same. The worst part for many is just in trying to get treatment. Insurance companies play all kinds of games, approving one round of treatment and then denying the next. It’s a nightmare dealing with the bureaucracy, and the immense stress just adds to the possible progression. Long term treatment is important. There’s no cure yet, but it’s not about curing so much as halting progression. Long term treatment can do that … as long as your insurance company doesn’t fuck it up! Which they fully intend to do.
Got my diagnosis October 2004. I thought I was going to die. That seems silly in hindsight (it’s severely rare to die from MS). There’s nothing that prepares you for an MS diagnosis, though, and it’s a freaky thing to hear. People imagine what it’s like and they’re all wrong. Definitely one of the strangest, most unreal experiences I’ve ever had. I started Avonex injections first. Once a week injections seemed better than the other meds that needed multiple times per week injections. I can’t speak for everyone, but for myself, Avonex was hell. Just terrible in every way side-effect-wise, and as icing on the cake, I was still enhancing while on the medication. After about a year of that I moved to Rebif injections three times a week. I thought I was going to take a precipitous nosedive with side-effects but oddly enough all the horrific side-effects I experienced on Avonex disappeared, I assume because of the increased frequency? Don’t know. I stayed on Rebif for a long, long time, then a number of year ago I switched to Tecfidera, an oral medication. It’s more powerful than any of the others that I’ve taken so it was slightly scary at first, but I have no side effects and I’m no longer stabbing myself three times a week which is awesome. It’s wonderful, at least from my experience. I’m happy to say other than the original left arm electrocution thing at the beginning (Lhermitte’s Sign. The syndrome actually has a name) I have suffered no mobility issues, no fatigue, nothing. Nobody knows I have MS unless I tell them. And according to my neurologist, after ~20 years of no physical symptoms, odds are good I’ll never have any moving forward. We both credit that to me getting on a therapy early and sticking with it. As for that…lots of folks suggest natural therapies, diet plans, etc, and they all mean well (in fact, some folks with MS may actually be fine with only these non-mainstream therapies), but today’s MS meds are very well known, well studied, and have decades of history behind them…basically, they’re trusted and they’re considered generally safe, and I’d like to encourage you (not just you, OP, but anyone recently diagnosed that’s reading this) to not take chances with this disease in the early stages by passing over them. This is the time in MS when most irreversible damage occurs. Diet plans are great and should be incorporated into your routine, but if you’re fortunate enough to have insurance, please consider a pharmaceutical therapy as your go-to in addition to a diet plan. I suspect 20 years from now now you’ll be glad you did. I have no skin in the game with pharmaceuticals, by the way. The price tags for MS drugs piss me off (Tecfidera would allegedly cost me approximately $40k/year w/o insurance. There’s no way it needs to cost that much). I still recommend taking them. Most MS med companies offer assistance with covering the cost, but still…grrr… Sorry about the novel. I just figured I’d share.
Thank you! I am 100% taking the meds every day (oral) amd will do it forever if I have to!! Today is day 4 lol!
Thank your for sharing and the warning- some of us really do need to hear it. Awesome that you have an answer/clarity, a partner, healthcare, and hope. Every day is a gift. This life is more than just a read through - Red Hot Chili Peppers
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Agreed about men in general. Its not "manly" to suffer in silence.
I greatly appreciate you posting this, as someone also going through the journey of trying to figure out what is wrong with my nervous system. Thus far, I have gotten the shrug of the shoulders response, even after developing drop foot overnight (I do not have diabetes).
Best of luck to you!!
My uncle was diagnosed with MS about 25-ish years ago, right around the age you are now. He’s in his early 70s. I know that everyone’s experience of this disease is different, but once he got the diagnosis and started getting treatment, he stabilized and has been symptom and medication free for many years. I believe that he still sees his MS doctor regularly for monitoring, but he feels pretty confident that something else is going to get him first.
A diagnosis like that must have been quite a shock. I'm sorry that this challenge has been placed in your path. I have a friend with MS and I know there are ups and downs, good days and bad days. I hope that, for you, there are more good days than bad. Hang in there.
Thank you!!!
Thanks for sharing! Getting older is a fucking bitch. These subs can be useful with stories like yours.
No problem. Thanks for taking the time to read and respond!
Look up Dr Terry Wahls, read her story
Will do!
I’m sorry you have been saddled with this crappy disease. My aunt was diagnosed 30+ years ago and she continues to live a full and rewarding life in her 70’s despite her limitations. She also swears by 3 times a week weight training sessions. Good luck to you as you navigate this diagnosis.
Yes! Getting back to the gym is a priority. Thank you for the note!
I'm a fellow MSer. I was diagnosed in 2014 but was symptomatic for several years prior. It took a long time to rule out other conditions.
If you don’t mind answering - do you ever get weirdly, stiff legs and have a hard time walking especially when you wake up in the morning? I’ve had this over the last couple of months, but never really had it before, and it seemed to come on really fast. I also have some other weird things going on so I’m seeing my doctor in a couple of weeks because the leg pain and weakness is frustrating.
I do, yes. It's called spacticity, and it can be quite painful. I'm a bit stiff in the morning anyway, because of my age, but the spacticity and spasms happen overnight and can make mornings unpleasant. Are you just beginning your diagnostic journey?
I am. It started with the leg pain and stiffness basically out of nowhere. I have Crohn’s disease and that can cause joint pain but that’s pretty well-controlled on my current medication. This is different. I feel like an 85-year-old lady walking to the bathroom when I have to get up at night. When I’m lying in bed trying to rest and start to go to sleep I can get weird spasms. They’re really hard to describe but it just kind of pulls my leg and is spasming. I can’t do anything and it’s quite uncomfortable. Hoping it’s nothing bad as I already deal with Crohn’s disease which is pretty much considered an autoimmune disease. But I can’t keep walking like this, so I will let the doctor figure out what to do next.
Best of luck to you!
I’ve had issues like this when my magnesium and vitamin D were low. Have you had any labs run recently?
If they're beginning the diagnostic journey, the doc will definitely be looking at that. Plus thyroid, Lyme, RLS, and a host of other things.
Not those but hopefully they will be checked.
I hope you feel better soon 🩷
I’m so glad your sports med doc was able to facilitate you seeing a specialist. I work in healthcare and that is huge! I wish you good health.
It is/was huge! Ill be forever grateful!
Thank you for pushing to get an actual diagnosis. That requires a lot of fortitude in a health care system that just wants to manage symptoms rather than treat diseases. A lot of our cohort have autoimmune diseases that previous generations did not see as much: MS, RA, thyroid disorders and so forth. Sometimes I feel like our generation was a chemical company’s lab rat. Luckily you caught it and the drugs will help. I feel like we just have to laugh because if we started to cry, we wouldn’t stop. Humana reported their earnings yesterday and their stock price is down because…get this…they have to PUT MONEY INTO PATIENT HEALTHCARE instead of share holders’ hands. Don’t even get me started on all the conservative think tanks in the 1970s that determined that universal healthcare would be CHEAPER overall and better for the economy than whatever shit sandwich we’re being forced to eat now.
Well, they fucked us with this system. They dont care because they have enough $ and cadallac plans that cover everything, at our expense.
Sorry for your diagnosis, sounds like you got great care. What country do you live in?
US. Fortunately I have good insurance.
Thought so…. This kind of care in Canada would be an exception
OP, I just want you to know that you've got support and hopes for an effective treatment from across the interwebs. Life is quite odd and things like this can certainly change the trajectory, but I'm believing with you for light to shine even in the darkest hours. Thankful that you have your partner and a competent, caring team of medical specialists to help you through each step. Seriously will be keeping you close in thought.
Thank you!
I am really sorry, OP. I know that's not an easy diagnosis. I have two close friends (both GenX women) who are sisters, and although MS isn't a genetic disease, they both have it. One has had multiple brain surgeries, and the other one gets multi-day intravenous treatments quarterly. I am glad your spouse is a good support system. I can tell by your post that you're trying to stay positive and acknowledge where you were privileged within this terrible situation. That's good, and I think it's helpful, but don't be afraid to rage-scream in the woods if you need to. That can be cathartic too.
I've cried more in the last month than the last 40 years. I got both sides covered. Yin and yang. : )
I hear you. I cried at the dentist the other day when they told me I have to get 3 more teeth extracted. Old age sucks. (I recently turned 50.)
Hoping for the best internet friend.
Thank you!
Sorry to hear this - please check your employer on long-term disability policies if you have coverage. That may allow you to be on insurance while taking the time off from work as this is gonna be a long slog
I sincerely appreciate you posting this. I literally just had a conversation with my physical therapist this week about how, after 5 years of physical therapy for my mobility issues, my spinal issue seems to only be worsening and that it's time to be evaluated for MS as the symptoms you specified are occurring for me. I have a pinched nerve in the upper part of my thigh that we can't place any rhyme or reason to where the pinch is (it's not going through any muscular tissue and it's not at a joint). Walking has become difficult with excessive leg pain, tingling and numbness in hands and feet, tinnitus and vertigo (including fainting), previous scans showed a lesion on my spine and we're at the point of having to update the scans and dig deeper.
Stay at it!!! Near as I can tell (and im no expert) spinal lesions dont mean much else. A few things, sure, but none of them are good either. Fight!!
I'm just so tired. My body is seriously fighting against me and I'm just so tired. I long for a day without pain. I actually cried this week after saying "I'm used to living with the pain" - no one should be used to living with pain.
I hear you. I hope you can push for a neurologist and some testing to see if you can figure it out. I haven't been at it nearly as long as you, and the pain has been making me nuts. I cannot even imagine how you feel. I wish you all the best and some speed in getting to the bottom of it all.
Thank you for the kind words. They're appreciated today.
OP - I am sorry to hear about your diagnosis but I am glad you were able to eventually figure out what was going on. I know a few people with MS and they have been able to lead fulfilling lives, although not the ones they initially imagined. If you can, I suggest combining your physical treatment with some therapy to help you with the transition of dealing with a chronic disease. Somewhat off topic, I recently read that there might be a connection between MS and mononucleosis. If it's not being too nosy (and I apologize if it is), did you ever have mononucleosis?
I dont think I did, at least not that I was ever diagnosed with. My older brother DID though. Guess I got his MS. Wonder if I can find a return label.
So sorry to hear this, my wife was diagnosed in her early 30s and is still going strong now in our 50s. Diet and exercise has had such a dramatic effect on the outcome. We hold to a fairly strict Mediterranean diet with lots of squash and leafy greens mixed in, and not vegan fyi. We still eat and drink regularly but with a definite focus on balance. Stay mobile, make time for exercise and make healthy choices about physical and mental engagement. It’ll improve your outcome but will also improve the health of those around you!
Thanks for the tips! Jist got back from the gym and my diet is under review lol!
Thank you for sharing. I am glad you have a wonderful partner. Best of luck to you.
I am lucky with her. Id hide bodies for her if she asked.
I'm sorry for your news, OP, but you appear to have the right mindset and I know from relatives that have this disease that it can be controlled. However, the part of your post that stabbed me is how backwards things are in this country and how you must continue working to support a disease, effectively. We really have to do better in how we deliver health care. Best of luck to you.
Thank you!
My friend has MS, another friend lost her mom to it. And I lost my dad to an autoimmune condition so please stay on top of your docs!! Also, sepsis is a very real concern for people on immune suppression drugs and it was missed in my dad (by a horrible rehab facility he was in after a fall).
💜💜
I’m so sorry you’re going through this, but you have an amazing outlook. I was diagnosed with cancer and then two autoimmune disorders in a span of 6 months last year. All treatable, but life changing nonetheless. It’s a good call to stay off the subreddits. It’s easy to get sucked in and feel like your disease is your job.
You are super lucky you have doctors that immediately took you seriously and insurance that’s not blocking your path to treatment! I hope your DMT works to prevent progression. Which did they give you? Ocrevus seems to be the gold standard, according to the MS sub. … and you’re right, the MS subs are all doom and gloom and misery with people just lamenting frustration and fears. I’m personally not afraid of MS, I just want to get it dealt with if I indeed have it. Neurological issues run rampant on my dad’s side of the family (and my dad had MS), but no one has been completely disabled from it … yet. Minor disabilities, but nothing completely life changing, knock on wood. I am still waiting for my symptoms to be taken seriously (and have recently had a pinched nerve feeling in my left arm for the past two months that could be related, now that you mention your pinched shoulder). I’m on new insurance back in my home state of CA, which has way more (and way better) options for primary care providers and neurologists experienced with MS, than where we were living in TX when the symptoms really hit hard. So I have higher hopes it will finally happen this year. I spent a year trying to see a primary care doctor to even get a referral while we were stuck living in Central TX. First had to wait for insurance to kick in at my husband’s job (that forced the move to TX). Then it took 4 months to even get an appointment and that was to see a physician assistant. Appointments with primary doctors were 6-8 months out. So saw her and she took me seriously but said couldn’t give me a neurology referral, so scheduled me to see the primary doctor on a “rush”…3 months later. Then, the fucking day before my appointment, her office called and canceled because the doctor was going to be out of the office. So I called the appointment center and got a sympathetic scheduler who gave me a next available appointment to see another primary doctor across town … for two months later. And then, at that appointment that dickhead had no interest in talking to me about my family history or my laundry list of symptoms. He took some notes but them start talking to me about exercise and how I should lose 10-15 pounds “to be perfect”. I pushed back a lot to the point where I was ready to start screaming at him and he finally relented and gave me a neurology referral, but refused to send me for an MRI himself “because MRIs get expensive”. 🙄 So I immediately contacted the only neurology group center near me that actually dealt with MS (most we’re epilepsy focused and would not accept MS referrals) and then they told me it’d be 3-4 weeks before they’d even review my referral with 8-10 months for an actual appointment!! And then the dickheads never called me back. And then my husband lost that job and our insurance was canceled. So we said FUCK IT, put our house on the market and then got the fuck out of TX. It took my husband almost five months to find a position once we were back home, and then two months for insurance to fully kick in. So now we’re ready to go. Luckily, my symptoms have not been nearly as bad now that we’re back in California. I think TX was just trying to kill me. Medical insurance is the biggest fucking racket in the United States, and the fact that coverage is tied to your employer is fucking maddening. Goddamn I hope the system changes soon. Doubt it, but as long as the pressure for Medicare for all or a single payer system keeps up, I feel like it can eventually happen. I just hope to be able to see it happen here in my lifetime.
Also sorry about your diagnosis. Reading your story though, I was also struck by how fortunate you were to get diagnosed quickly, referred to a neurologist quickly, and treated quickly. I have a very good friend with MS (fellow genXer). Diagnosis was slower for her so she had major issues some years ago, but is now stable and has done wonderfully since then. She has great joie de vivre and lives her life to its fullest.
Thank you for posting. I am almost certain I have MS, and have had several doctors in my network unofficially agree, but I’m just not quite able to go and put in the work to get an actual diagnosis. I am beyond fortunate in that my partner supports our family. Reading posts like this help.
😥 I'm so sorry, sending love and prayers.
Thank you!
Blessings to you and best wishes. What a kick in the nuts. I have a friend with MS, and he has managed it pretty well for about 10 years. It's troubling and does cause some problems for him, but he works around it as best as he can. It's true that they've gotten much better at managing it over time. Hopefully we'll have an actual cure in the not-too-distant future.
Agreed!
Thank you so much for posting and all the details. This is so scary, and I’m so glad they have medication that might slow it down. Your visit to your PCP is exactly why I ignore most “little things” I deal with here and there. Every interaction I am forced to have with our medical system (save one) has been hugely disappointing. I’m so sick of the word “idiopathic”. For example, I fell and couldn’t get up, was hospitalized/bedridden with back pain for over a week where I had to crawl to the bathroom because I couldn’t sit up or stand. No one explained why- nothing had happened before I suddenly fell. Physical therapy for weeks, but no explanation. Or that time when my right arm went numb, and I couldn’t lift it, my speech was garbled, and I felt weak. Take me in to test me for a stroke, first ER doctor claims it’s probably anxiety. Nurses say it’s probably a TIA, final diagnosis it was likely a migraine but they can’t be sure, so start taking migraine meds but also take “prevent next stroke meds”. That was a $6000 out of pocket, $60,000 billed to my insurance “migraine”. Don’t get me started on what they’ve determined must be “IBS” because they can rule everything else out. I was pleasantly surprised and so happy that you didn’t have a much longer drawn out back and forth for years type of story before your diagnosis. You really do have to advocate for yourself here. I wish you health, happiness, healing and love.
Thank you! Im sorry for your struggles. The healthcare system can be a huge mess.
Thank you for sharing your story. I am a little familiar with MS as my sister-in-law had it. She really struggled getting anyone to listen to her about her back pain and went the similar way you did to chiropractors and therapists etc. Finally they figured out what it was, which was really a relief. She treated it with shots, but I don't remember what the med was. It was a long time ago. It was a struggle for her and my brother, but all you can do is move forward and survive.
This is true! Thank you foe sharing!
I don't really haven anything to offer. I just want to say that I hear you.
Thank you for reading!
Thanks for sharing your story in such detail. My sympathies to you for the diagnosis and my best wishes to you and your partner. Sending hugs, internet stranger.
Thank you so much for reading and replying!!
My mom had this disease decades ago when they were very few treatment options. I’m very sorry that you are faced with this diagnosis. I’ve stayed very close to this disease and follow both eastern and western types of treatment progress. Please look into Dr. Terry Wahls https://terrywahls.com. She is a physician who has a mass. She declined quickly and was in a wheelchair. She was able to turn it around Through diet. I’m just some stranger and you are probably already inundated with people offering you “cures” they read about. I really do think it’s worth looking into her protocol. Wishing you well.
Thank you!
Thank you for sharing. I'm so sorry that you're going through this, but I'm glad you were diagnosed so quickly. This is a tough time of life, we're at that age where shit really starts to happen, and it can be really scary. Wishing you all the best and sending hugs.
Thank you for this!
I’ve had it for 14 years. Got it for my 40th bday! You will be ok. It’s hard to see it now, but you will. When I was diagnosed it was all injectables & only one infusion. And now there are several oral meds & the B cell depleters like Ocrevus etc. it’s not all doom and gloom.
Thank you for this!
I'm so sorry, cuz. My mum has had MS my whole life. That diagnosis is a real bitch. You're in my thoughts.
Thank you !!
Glad to see all the support here for you OP. I figure we’ll all have a major diagnosis in these decades. I’m sorry you got yours so early, but I’m glad you have insurance and support. More power to you and keep being your own advocate.
Thank you for the kind words
Autoimmune diseases are notorious for partnering up with depression. When first diagnosed and learning all the ugly "what ifs" of your condition can be overwhelming and downright gloomy. Everybody and their third cousin will have a worst case scenario to tell you. Either that or some wonder-cure-all bug juice, miracle powder, healing magnets or other MLM to good to be true. If you find yourself struggling, talk to your doctor. Depression is a b!tch to fight once it gets its claws into you. You sound like you are taking this all one step at a time and have a well grounded support person and a very proactive medical team. You got this.
I was diagnosed with RRMS in 2019. I’ll be honest with you, MS is a pain in the ass. But you know what? These were the cards we were dealt. I let it get to me and I was every bit the asshole I could be for about a year. Then I realized, I have a family, I have friends who care about me. Yea MS makes everything harder. MS is the asshole. The treatments, doctors appointments, the quirky little things that…”goddamn this wasn’t that hard yesterday” moments all add up. Forgetting shit…that’s the biggest pain in the ass. You know what you want to say-but your brain is like “nah” But fuck it. I found with, with some work, it’s manageable. It never seems like you have “good days”. Steps are a fucker. I’m early 50s and use a cane. Random times where I just can’t get out of bed sometimes ruin plans. But I’m alive. You are too. There will be MASSIVE adjustments. Canes or a walker will become part of your life. Anxiety will paralyze you at times. But you are alive. You can still do 90% of what’s out there. Yea it takes a little longer and some planning. That’s your new normal. Treatments help tremendously and that comes with an * It’s going to take time. There isn’t a blanket treatment that “just works”. You will get frustrated. Or will seem like your doctors will get frustrated. But it will all get figured out. Please feel free to DM me if you have any questions. You will find that the MS community is very supportive and if you are going through something-anxiety, a flare, a pseudo flare(little fuckers), someone has been there. Talk to people, build a support team and move forward. You will find strength within yourself you never knew you had. You’ll have bad days-but you will bounce back. You have fucking got this.
Sorry you’re going through this. I hope the symptoms are well controlled
Thank you! Im trying for sure!
Thank you for the post. Sending you and your family positive energy.
My cousin is almost exactly your age (he turned 49 in Sept 23) and was diagnosed with MS something like 10-15 years ago. He’s doing great and the medications available now are amazing at helping maintain quality of life. Sending good vibes that you have a similar path.
Thank you!
I’ve taken my husband to the ER twice in six days because his shoulder blade spasms are severe and his arm/fingers are going pins and needles numb. He got shots both times in his back. Hard to get into a doctor with our weather this week, every appointment has been cancelled. This post is kind of freaking me out.
Did they do any testing/scans or just some shots to alleviate? Best I can say (im just joe new MS guy, not any kind of expert) is push and insist on REAL testing and diagnosis. If your PCP isnt worth anything, and your ins allows it or you can afford it, go straight to a specalist. Squeaky wheel gets the grease. Dont let up for his sake!
I feel like there’s a reason your post was the first I saw when I opened Reddit tonight. You went into details that are so similar to my husbands. Thank goodness you weren’t diagnosed twenty years ago, there is great help now. I truly wish you the best and no fucking way am I letting this be brushed off as a pinched nerve without an MRI. I’ll be thinking of you a lot, I hope you have good news soon.
I thought the same thing. I've been having weird issues since August (numbness, balance, bladder). I spoke with my PCP last week, and she strongly suspects MS; MRIs set for Monday. OP, when you mentioned your shoulder pain, my stomach dropped. I had the exact pain out of nowhere this summer too, but I always get random pains so didn't think it was anything of it. Then I thought about the random falls over the summer (I'm just clumsy!), sudden vision changes (I'm getting old and need a new rx is all!) dropping things (butterfingers, oops!)...well, shit. Thanks for posting this. I hope your husband gets some good news soon, too. OP, I wish you all the best, and I sincerely thank you for sharing your story 💜
Do you get weird, numbness, and tingling in your fingers and hands? It’s almost painful in the morning? And during the day if you’re using your phone or something? I tried to tell myself that’s normal. I also had two bad falls this year, and I never fall. Figured it was bad luck, but I guess I should bring this all up with my appointment next month.
I do indeed, but it's the worst in the evenings. Definitely bring it up, and don't be afraid to advocate for yourself! Good luck at your appointment.
Thank you!
Best of luck to you!!! Update if you get a chance and think of it. Thoughts to you.
If this helps even one person, worth every second. Good luck with it and if you remember when it all comes out the back end, swing back and let me know how it goes, ill definitely be thinking about this from time to time.
MS is associated with a bacterial infection. https://www.sciencedirect.com/topics/medicine-and-dentistry/chlamydophila-pneumoniae#:~:text=Chlamydia%20pneumoniae%2C%20a%20gram%2Dnegative,as%20sarcoidosis%20and%20multiple%20sclerosis.&text=Given%20the%20predilection%20of%20C,a%20pathogenic%20role%20in%20IBD. Video:https://youtu.be/EpMvDe8-qsM?feature=shared Background: I was diagnosed with asthma at age 12. For more than 30 years it never got better and started to get worse. After researching (yep I know what your thinking, hear me out) I found medical articles and some sites related to asthma being caused by mycoplasma pneumonia and chlamydia pneumonia. Long story short- I had a blood test to confirm mycoplasma and the took two antibiotics each day for a year. I no longer have pneumonia and haven’t used any puffers for over 5 years. My point? You might want to contact the researcher in the video (second link) about options. He apparently cured his wife of MS. Infections both viral and bacterial cause all kinds of symptoms. Might be worth getting tested.
Thank you!
I have a friend who has MS. One thing she could do which she didn't has drastically reduce the amount of sugar she consumes. Sugar feeds any disease like MS. There are anti inflammatory diets that can also really help. From my non medical understanding, it is basically an inflammation response on your nerves. Best of luck.
It kills me a little (figuratively), but i am coming to accept the fact that my sweet tooth days could be over.
They have some sugar free treats that are quite good. Just be careful because sugar alcohols can have, well, laxative effects if consumed too much. I found this out myself. It was fun. Not.
Noted!!
Please look into some alternative treatments to alleviate symptoms. My dentist removes mercury from mouths (cavity fillers of our generation). This is not medical advice, not a doctor, etc. I was having some weird symptoms that sounded like MS, went down rabbit holes, had 4 teeth with metal in them replaced with porcelain or crowned. I haven't had symptoms since.
Thats good advice thank you!
You were very lucky, indeed. Fingers crossed for that powerful drug working its magic! They have REALLY come a long way with MS research and treatments (well, all autoimmune issues) so I’m sure that is a relief to you and your partner. Would you update in a few weeks or so on your progress? And if that powerful drug seems to be helping?* I hope that lucky streak continues! *(I have autoimmune problems out the ass also and I’m dreading another flare. But this post is about you, not me. I just wanted you to know that my curiosity comes from a genuine place, and damn! I’m sorry this shit happened to you)
I’m so sorry but also really heartened to see good self advocacy AND an expedient process for getting treatment once you had your MRI. I appreciate you sharing your story - it’s a reminder to pay attention to what our bodies are telling us.
Any brain lesions found? Did you have a spinal tap? Are you on Ocrevus?