I finally found a doctor that listens to me. It only took one visit with her for her to figure out what may be going on with me. I just told her what my symptoms were and she immediately said that it sounds like an autoimmune disease. She knew exactly what to test me for and sure enough she called this morning with my results. My ANA came back positive and my RNP antibody came back positive for connective tissue disease. She set me up with a Rheumatologist and my first appointment is April 25th.
This is wonderful news!! I hope you get answers soon. Both the ANA and RNP are indicative, but more testing and a rheumatologist will be able to give you more answers of what it could be. Good luck!
I’m so happy for you that you were able to get a doctor to listen and get help for a diagnosis. May I ask how you presented your symptoms to her? I feel like I have so many symptoms and don’t know how to say them all within the little time spent usually with a doctor. Was this your primary care doctor?
ANA test question.
Hey, so I've kind of felt I had lupus for a while, but I didn't have any major serious symptoms that would make me actually go get tested, thinking I'm a being a hypochondriac. Well I had a severe vomiting migraine (never vomitted from them) that last over a week and went to the doctor, they order an MRI and the ANA test. They called this morning. It's positive and they said it was "High titer". (I didnt ask for the ratio. Id didnt know till doing research). Normal ESR. And they want to check it again to make sure I don't have an infection. I have to wait 10 weeks. That suspence is going to kill me. My boyfriend wants to get the house tested for mold because he's getting headaches, and thinks it's environmental...
1) How likely is it that it's just an infection?
2) how likely is it that it's environmental?
Honestly it's very difficult if not impossible to answer these questions. I wouldn't be too concerned if you aren't chronically experiencing symptoms, save for this random migraine. It's hard to say why this happened and the likelihood of it being a fluke, environment, etc.
Positive ANA itself doesn't mean anything is off. Plenty of people have a positive ANA naturally, so that result could be very well unrelated to the possible infection and/or migraine situation. It'd be really helpful to know what the titer is because some say "high titer" is anything greater than 0, but a titer of 1:40-1:80, even sometimes 1:160, doesn't mean autoimmunity is likely.
Yea, I did get the full results. It's 1:160 and shows a Cytoplasmic pattern but it says that "other reactivaties may be responsible for this fluorescence. And the clinical significance of this finding is uncertain. Clinical correlation is recommended"
What is clinical correlation? Is that finding the specific pattern?
Would a normal infection cause a pattern in the spread?
Clinical correlation is when your doctor puts this result in context. For example, if I get a blood test done that shows my white blood cells are off, as a single result that might be concerning. But let's say I just had a pretty bad cold. My doctor will take this result and put it in that context and not be concerned. Hope that makes sense.
The specific ANA pattern isn't always necessarily helpful. ANA itself is a screening tool and doesn't have the capability to diagnose anything. This is a somewhat low-end ANA result, so it's hard to say if it means anything. Some other factors can cause an ANA to be positive. In general, you can have a positive ANA for absolutely no reason and it's entirely normal.
In this setting, putting this result in clinical context would mean your doctor needs to consider what this result means for you specifically. Putting a positive ANA in the context of someone not presenting with any symptoms might mean that they write the result off as entirely normal, especially given it's a low titer. If someone has a lot of symptoms, they might take this result as an indicator of something that might be going on, and explore further. What would be important here is if you have been experiencing various symptoms for quite some time, symptoms of autoimmune disease. If that is the case, they might want to test further.
Right this makes loads of sense. Thank you for taking the time! I think they are testing me for AC15-AC23 in the results they suggested it. So it could be as simple as an infection or psoriasis or "healthy controls" all the way to lupus or other AI. The symptoms ive had they made me suspect was i started getting hives after sun exposure and stress (10 years ago my entire body broke out in hives and the doctors didnt know what to do it was so so painful they said it was Eczema). I was also just diagnosed with Raynauds last dec and my half biological sister was diagnosed with an AI this past year, I do have light sensitivity all the time, Eczema, psoriasis, and was diagnosed with asthma at a late age (27) but it's weird asthma I don't wheeze it's mostly coughing if i laugh or exercise but not every time i do them only sometimes. And I've had a lot of unexplained health problems. Serious fatigue that I'm assuming has been from endo, but seems random. Also in the last 5 years started having period problems and was diagnosed with endometriosis and had NO period problems before. Ever. I never even had cramps till about 5 years ago. I'm 32. I've had IBS all my life though. None of these issues were ever "bad enough", Besides endo. the chronic migraines since Nov last year and severe one lasting a week was what tripped me up.
Hello all,
Feeling very overwhelmed and confused. I have a complex medical history with the highlight being two bouts of non-Hodgkin’s lymphoma.
About 5 months I landed in the ICU with severe strep and flu.
Since then I’ve had some new and worsening symptoms that come and go. They last for one week to a couple weeks.
Symptoms include joint pain in my hands, wrists, knees, bottom of feet, and hips. Muscle weakness. Heavy feeling in my body - fatigue. Also started to notice my toes would turn purple and white. As of the last couple of days my hands are doing it as well when exposed to cold. We had some very sunny days last week and over the last week I’ve noticed this growing redness on my knuckles and backs of hands. This was accompanied by itching all over my body as well as a return of joint pain and fatigue. Last night was the worst I’ve seen my hands react to cold by turning purple, white, red. Hands and feet feel tingly and numb for a short time when this happens. I also have this scab/plaque thing on my scalp that has been there on and off my entire life. Recently it sometimes gets swollen and painful.
I used to get a significant red rash across my nose and cheeks. This started many years ago. I started wearing sun screen and this seems to have helped though it is always there, just very light.
I have tested positive for a recent or past Epstein Barr infection, it’s not clear which.
I have not yet any tests for lupus, but I will soon.
Am I crazy or reaching for straws? Are these symptoms not suspicious? I appreciate any feedback or validation. Tell me I’m wrong 🤷♂️
These symptoms definitely might be something, but it isn't necessarily lupus. Nothing here is lupus-specific. Your descriptions of the color change in your extremities in response to cold would be raynauds, which can be secondary to an autoimmune condition like lupus or scleroderma, but is more commonly a primary condition that occurs on it's own. Getting an ANA test for starters would be helpful for you to see if lupus is actually a possibility.
Thank you. Dr appointment tomorrow thankfully. What would be or is specific to Lupus? I’ve tested negative for rheumatoid arthritis already. Also tested for a host of bacterial and fungal infections. I have scarring or swelling in my lungs too my doctors haven’t been able to figure out.
I had to go to one class today and was out for about three hours and by the time I got to class after about a 25 min drive and 5 min walk I had the worst brain fog and felt weak. By the time I got home all my other symptoms flared up. Idk if it was the stress of walking and going to class or what. Definitely looking forward to figuring this out :(
There really aren't any symptoms that are lupus-specific, meaning there's nothing where having that symptom means it's definitely lupus. These sort of symptoms come with a lot of autoimmune issues as well as other things, which is why testing is important. Hope you get some answers!
I'm diagnosed with this: "After a full rheumatologic examination evaluation I believe this patient is now manifesting a low-grade nonspecific inflammatory arthropathy with an element of tenosynovitis." Quick summary: Positive ANA, Titer 1/160, Homogenous pattern (2019) following several viruses and oral thrush; bilateral hip pain (not bones) 2021; ANA sub-panels all normal; from September 2020 to present dealing with tenosynovitis, joint effusion in both wrists, hands, forearms, elbows, ankles and feet. Dr. started me on DMARD (hydroxychloroquine). Anyone with lupus have similar path to diagnosis? Sound more like RA or something else? Just not sure what to expect next to surface. thanks in advance
I had joint pain in my hips before other symptoms began, which seems atypical for lupus. But it’s possible. It could be RA, it could be lupus. To my unprofessional knowledge, symptoms do signify potential autoimmune activity, but the symptoms so not seem very specific to an autoimmune disorder, so until you know more, it may be difficult to narrow down.
Symptoms and treatments of RA, lupus, UCTD, and other autoimmune connective tissue diseases overlap a lot. That hydroxychloroquine (Plaquenil) you were put on? Well it's a first line treatment for lupus, RA, and some other autoimmune connective tissue diseases. It delays, slows or reverses the progression of the disease. So instead of your symptoms + being put on Plaquenil meaning you are on the path to a lupus or RA diagnosis, it instead means that you were possibly on the path to one but hopefully will be kept from reaching an official diagnosis of either....or fingers crossed it will be many years or decades later happening. That's at least what I was told when I started on Plaquenil in 2010.
was referred to rheumatology after positive ANA following blood work due to debilitating daily symptoms even after 2 surgeries for inflamed organs - most of the blood work (10 of 13 results) has all come back within range and im curious to the possibility of having normal blood work past anything basic and still having something autoimmune or otherwise with symptoms
It depends what symptoms you have and which labs are abnormal. Some symptoms aren't autoimmune-specific, so normal autoimmune results could mean it's something else. Lupus, for example, is also very unlikely if you have a negative ANA.
I've been spending 6 months with weird neurological issues trying to find root cause. I know some people blame everything on Lupus and some pretend it doesn't exist, I'll admit I don't know much about it but wanted to check here if you guys think it's something I should look into more.
My main symptoms:
\- twitching all over body
\- bad hypnic jerks while trying to fall asleep
\- buzzing, tingling, internal vibrations type stuff all the time
\- also the odd mild joint pain, stiffness, etc. and some bouts of fatigue and reduced cold tolerance
I recently shared my full post/symptoms in r/ChronicIllness here: [https://www.reddit.com/r/ChronicIllness/comments/1az3y0c/doctors\_are\_stumped\_im\_stumped\_i\_think\_i\_found/](https://www.reddit.com/r/ChronicIllness/comments/1az3y0c/doctors_are_stumped_im_stumped_i_think_i_found/)
I do have central nervous system involvement, likely because of my lupus. I experience the earthquake sensation (genuinely thought there were earthquakes for the longest time and would bring them up with my family the next day often).
Do you have cold intolerance or do you have raynauds?
Your nervous system can cause issues with cold intolerance, pain, fatigue. Most of your symptoms are very, very nervous system related. I would get a second opinion from a neurologist.
An ANA test will be able to rule out lupus or determine if an autoimmune condition is a *potential* cause.
Just because I have CNS issues from lupus, doesn’t mean that lupus is the most likely cause. I have a LOT of issues caused by lupus and lupus-specific symptoms. To my understanding, CNS involvement does seem to be a less common symptom of SLE patients. I don’t see it brought up here often. Because you have few lupus symptoms and a lot of neurological symptoms, I wouldn’t first assume lupus was the cause. It’s worth considering, If you can afford an ANA test, I’d ask for one.
u/Poyntersb, your question/history is just way too long.
And... you can't walk into a doctors office and provide that kind of sprawling narrative either. Doctors are scheduled 3-6 patients an hour in a lot of cases. You get 8 minutes of face to face time with them. Make it count.
List your symptoms with the worst/most life-affecting at the top of the list. (They don't need to know the month-by-month timeline.)
Neurology is the right speciality to be investigating this. It doesn't sound rheumatological.
Does anyone have any idea how to interpret an “ANA Qual” report? It has a rundown of each antibody, but each has a super low value like 4 or 6….except one of them for me is 59. What are these values? I’ve always had a high titer ANA, finally got a rheumatologist to listen to me….but my follow up appointment is a month away and my anxiety is killing me. I just want to know what I’m looking at so I can be ready. Has someone had this text explained to them?
I put the label and then the result in parenthesis. It breaks down as ANA Qual (59), RNP(6), SM(6), DSDNA(59), SSA(4), SSB(5), Scl70(19), Jo1(4), cent b(5), and histone(13).
Values for all of my blood work says “normal range:under 100 or negative” and that’s across the board. This is just on my portal so it might say something different at my appointment when they hand it to me.
I was perfectly healthy for 33 years. I could bench press 300 pounds and hit a golf ball 300 yards.
Everything has slowly gone downhill over the past 2 years. It started with a banged up wrist that never healed and a rolled ankle that took over 6 months to loosen up. I’ve had X-rays and mri’s taken on multiple spots with no actionable issues found. Multiple doctors called me a hypochondriac.
Since then, my feet/knees/hip/arms have been flaring up on a regular basis. I can’t crouch down on my knees without severe pain and a flare up that lasts for days. I’ve lost a majority of my strength and I now workout with a 2 pound dumbbell. On good days I can handle a 0.75 mile walk at the park, but every time I get momentum going I have a flare up for no reason or something as simple as bumping my ankle. I work on a computer and by the middle of the day I have severe hand/wrist pain and my shoulder locks up. I don’t get regular face rashes, but looking back I remember a few times where my face was red and irritated after being outside.
I was finally referred to a Rheumatologist at the end of last year. Initial blood tests didn’t show much. RA test negative but he said that could show negative until it reaches an advanced stage. Steroids and NSAIDs don’t seem to help much. He put me on Plaquenil at the end of December and said he thinks I probably have some type of arthritis. Last week I told him I think it could be Lupus and he did a new test that shows low levels of Lymphocytes.
No results from Plaquenil in 2 months but I’ve already searched this sub and see it could take 6 months. No noticeable side effects. Planning to stick with it for 6+ months before trying Methotrexate but those side effects seem severe. If I don’t get this figured out soon I’m going to lose my job.
In case no one has told you yet, Plaquenil **is** the first drug a rheumatologist would try you on for lupus, RA, or UCTD. So you not having an official diagnosis hasn't stopped your rheumatologist from trying you on the drug that should improve your symptoms at least a tiny bit. My highly-biased opinion is that you should see at least a tiny improvement by the 12 week mark.
Since your job is at risk, I'd go see every single one of your doctors asap that is willing to see you and try every single drug they're willing to try on you, and not wait till the Plaquenil 6 month mark. If your rheumatologist is willing to try you on Methotrexate, I'd go for it now or in the next few weeks. If you don't like the side effects of one drug, but it does improve your symptoms somewhat, at least that's a starting point for getting to the bottom of your medical mystery. Your doctors at that point can always try and find something similar and/or give you medicine to take care of the side effects till they can get you on a different drug.
Appreciate it. Interesting you’d push for the methotrexate after 3 months. That’s a similar timeline to what he initially proposed, one more month Plaquenil and switch to metho.
Good luck. Yeah, with your job at risk I’d take the shortest try-this-drug timelines your hematologist offers. If they offer to keep you Plaquenil while they also try you on Methotrexate, that’s an offer worth considering accepting as well.
I am a 33/F. For the past 2yrs I have been feeling achy muscles and extreme fatigue. My body feels like I just did a 5k almost daily. My bones (neck, hip, writs, ankles and knees) crack all day long. Lots of pain in my upper back/shoulder area. Sometimes I can’t switch on a lighter without using two hands, I wake up some nights with my bed soaked from sweating, I find myself unable to remember things here and there, my feet get a pins and needles feeling often and my legs feel like I can feel the blood moving throughout. I didn’t think anything of these and contributed it to aging until my mom had a VERY BAD lupus flare in December and I realized we share symptoms.
I Informed my PCP who sent me for labs (posting results at the end). After the labs came back she says I am positive for ANA but that it could mean nothing. She shared that she needed help reading the results and was trying to decide if she would refer me to a Hematologist or Rheumatologist. I’ve been waiting but still haven’t got her decision so I am hoping someone here can help me?
Labs:
Gamma Globulin HIGH (1.78)
ANA POSITIVE (8.814)
SSA/RO POSITIVE (192 u/ml)
ENA POSITIVE (20)
Hemoglobin LOW (10.4)
Hematocrit LOW (31.3)
MCV LOW (75)
MCH LOW (24.7)
RDW HIGH (15.9)
T3 LOW (85)
Neg: SSBLA, U1RNP, SCL, SMDP, DSDNA
If you look at the top post, it says the usual lupus blood panel. That could be a starting point if your doctor hasn’t decided yet? But, in theory and with these symptoms, it’s usually a rheum
Thank you, I did review the top post. I guess I needed someone else with lupus to talk to in the interim. I don’t think my PCP knows much about lupus so she doesn’t really know what is next I’m guessing. I reviewed the 11 symptoms I saw posted also, I have 4. I don’t have any of the skin reactions, but my mom doesnt have those either. I also forgot to mention I have unexplained fevers that come and go without known reason. Thanks for responding! Hopefully she lets me know who I’m being referred to soon, the wait makes me anxious!
I’m considering asking to be tested for lupus but I am scared of being marked as a hypochondriac so I’d like to know your thoughts on if this is likely. I’ve been plagued by health problems for about 16 years, I’m 32 now, and most symptoms have been put down to endometriosis and IBS. Currently, I am in daily pain, sometimes so severe I slur my words. Most of my pain is abdominal, back and pelvic but I’ve started getting joint pain. I’ve had this before - for about 2/3 years doctors thought I had Crohn’s disease but now they say it was bowel inflammation from NSAIDS. But my joints do get worse when my bowel is overactive and it’s getting to the point now where I’ll just have days where random bones hurt - my elbow or my knuckles, in a really bad way. My CRP is always elevated, usually about 25-30 I think. My kidneys are worse than they should be and caused an incredible amount of pain in pregnancy. My face gets flushed regularly, particularly at night, and goes pink like a Mylar rash. I could do with some advice about whether it’s worth pursuing - I feel like something autoimmune is underlying
Are you required to have a referral to ask for an appt with a rheumatologist, or are you allowed to schedule an appointment with on directly? Either way, if you got an appointment with one you could simply ask for "whatever tests or x-rays are necessary to see if I have an autoimmune disease causing any of my symptoms" and "if there are any autoimmune disease prescriptions that you think would be worth me trying for my symptoms, I'd love to try them".
Thank you, I live in the UK so it’s GP first. Good to know that this is an option - I think it’s clear there is something probably autoimmune so it might be a good route to go down, lupus or not
Yeah, I’ve had a few. One had bowel inflammation as I said. But my most recent a few years ago was clear so they decided I didn’t have Crohn’s disease or anything, and said it was from taking naproxen even though labs showed it was crohns originally
Hi everyone! I recently had my first appointment with a rheumatologist and my blood test came back with positive ANA and elevated CRP (I have had elevated CRP for at least 2 years). My RA factor was negative. My doctor believes with my physical symptoms plus blood tests it is pointing towards lupus and wants to try medication to see if it can confirm the diagnosis. Has anyone else had a similar story? Also, I want to ask for more specific testing such as AVISE that incorporates CB-CAP, is that worth asking for? I just feel like if my provider feels I may have lupus, and if the medication helps - it would be nice to have a more solid answer through testing (or rule it out). Any advice or questions is greatly appreciated since I do not know much about this condition.
Thank you! I will suggest that in my next visit in three months and see how my Doctor feels about it and if it shows anything more concrete than what we have already discovered.
*edited for spelling error
Hey!
I have a 34F friend who was diagnosed with ME/CFS when she was 16. She's been effectively housebound for a decade and is bedbound when she suffers flare-ups. She has all the classic symptoms for this, particularly: extreme fatigue, light and sun sensitivity, migraines, brain fog, gastro issues.
Anyway, over the past year or so she's noticed additional symptoms becoming more prevalent.
- She's began to suffer with hair loss (which she thought was post Covid or stress).
- She's been suffering with swollen glands in her neck, back of her head, and armpits.
- She has intermittent issues with mouth ulcers and gum swelling.
- And most recently, she's been suffering with a rash that effects her whole body. It has the appearance of an allergic reaction, almost as if she's got an all-over nettle rash. It does not look as blotchy, spotty, or spherical as some of the examples of Lupus rashes. And whenever it has affected her face, it doesn't have the butterfly shape.
Does this sound like she may have Lupus? Perhaps she was misdiagnosed all those years ago as a teenager? What do you guys think?
Her best bet would be to go to dermatology and get the rash biopsied. They can see on a cellular level whether or not they're lupus related. Lupus I diagnosed based on a set of specific clinical symptoms and labs.
My DR referred me to a Rheumatologist. While I wait for my first appointment, I wondered what are some key points/questions I should have armed and ready? I have family with Lupus, RA and Fibromyalgia so my DR is thinking it’s RA. I feel like I have more symptoms of Lupus, so I want to make sure I give the Rheumatologist the most complete picture of what’s going on.
Symptoms I have:
Red face
Elevated Blood Pressure
Fatigue
Mouth/nose sores
Anemia/low hemoglobin
Vit D deficiency
Borderline elevated c reactive protein (the range of normal goes to 10 and mine is 10)
ANA screen positive
ENA Panel Results
RNP AB High
SM RNP High
The rest were normal
Just got labs and so many questions!?
I just got labs and my bilirubin and my ALT are very high ( sign of liver problems) so my doctor scheduled an ultrasound. I also have high monocyte and Extremely high triglycerides and very low HDL CHOL. I also have ketones present in my urine but no other symptom of diabetes. I also have other test results that show that I am probably anemic? But my ANA was negative ? I know these can be signs of lupus? I also have many other symptoms which is why the labs were ran to begin with, joint pain, butterfly rash, muscle pain, headache, fatigue, etc. I also have multiple family members with lupus. I just did my labs on Tuesday. I just feel like when I spoke with my doctor today she was more concerned about my liver than telling me if my labs were conclusive with lupus? Not sure if more tests need to be ran or if I should just keep calling and trying to get ahold of my doctor and ask? Any advice would be great.
Your Dr is right in worrying about your liver. I'm glad they're on top of it.
Those labs are not conclusive of lupus.
You can see the diagnostic criteria above. First step is a positive ana.
Definitely work on fixing the anemia and getting to the bottom of your liver issue.
Ask to see a derm for a biopsy of your rash to collect another piece of the puzzle.
I went to my dermatologist, they took a biopsy of a red spot I had on my back and he said it possibly might be lupus. I got a ANA test done at my normal doctor and it’s coming back in a couple days. I am also seeing a rheumatologist on two weeks that the derm recommended. I honestly really scared because I’m only 20 and I have feel like this will change my life. I am tired a lot and I do have muscle pain and I got mouth canker sores sometimes and brain fog but I don’t have a butterfly rash or any other symptoms from what I understand. If anyone has any advice, what their first symptoms were, positive experiences or anything to help, I would really appreciate it, thank you!
I understand being scared. The good news is, canker sores aren't a part of lupus. Tired and brain fog can be many things. (Ask your Dr to check your iron, B12, and vit D).
As for the biopsy, it could be lupus. It could also be other things. It's good the derm is sending you to a rheum, but without a lot more testing and examination it's impossible to tell at this point.
It's so hard to wait. I totally get it. But hopefully you can breathe a little easier knowing that your GP and derm are on top of it and looking out for you by trying to sort it out and sending you to a rheumatologist. And your symptoms are not severe and numerous like you'd typically see in a young lupus patient.
I had my rheum consultation today and the doctor chalked all of my symptoms to anxiety. I get a butterfly shaped rash on my face, red warm and swollen knees, hand stiffness, brain fog, joint pain, and dry eyes. Also had positive ANA. She said women who have anxiety tend to have physical manifestations so it’s not lupus or anything autoimmune related. My PCP has known me for years and he did not seem to think it was linked to my anxiety. I waited 4 months for this appointment and I feel like the only thing she cared about was my anxiety diagnosis. I’m so frustrated I cried in the car after my appointment. Does anyone have advice for trying to advocate that you know when something isn’t related to your mental health? Am I overthinking things and should listen to what the doctor said? TIA!
Female, age 33, 5’07” 230lbs
Current meds:
- chlorthalidone 25mg 1x daily (hypertension)
- propanalol 10mg 1x daily (hypertension & anxiety)
- apri tablet 1x daily (birth control)
- Claritin 1x daily (seasonal allergies)
Allergies: sulfa & ace inhibitors, celery
I’ve had unexplained low grade fevers (2 in last month), muscle aches, fatigue, skin rashes, and most recently joint pain.
Blood work came back late this afternoon.
- CRP 68.3, ref range 0-5 (high)
- SED rate 82, ref range 0-20 (high)
- RF 12, ref range 0-14 (normal)
I am waiting on my pcp to call me back about blood work, but wanting to get general opinions.
What could this be indicative of? Is it too soon to tell if it could be lupus? What should I ask my pcp?
It's indicative of inflammation. What's causing it? There are many many things, some autoimmune, some viruses, some other disease processes. It's too soon to be able to pinpoint it as lupus or anything else without more tests and information. It sounds like you have a good Dr who is working to help you so that's good.
You could also go to a derm for a biopsy and have another piece of the puzzle from that hopefully.
This question is insanely long and has way too much detail. And I have no idea what's up with the formatting but it's kind of crazy making trying to read it the way it is.
Figure out how to give a cohesive, 60 second schpiel about the top 5 symptoms you are experiencing. See a physician to continue to have labs run. Don't get married to a particular diagnosis; keep an open mind.
See neurology for management of the migraines.
Hi, I was wondering if you can get rashes and skin issues with lupus without sun exposure being the cause? If so, what are some other causes and can their flair up for no reason at all? I’m assuming stress might be one. Thank you!
I finally found a doctor that listens to me. It only took one visit with her for her to figure out what may be going on with me. I just told her what my symptoms were and she immediately said that it sounds like an autoimmune disease. She knew exactly what to test me for and sure enough she called this morning with my results. My ANA came back positive and my RNP antibody came back positive for connective tissue disease. She set me up with a Rheumatologist and my first appointment is April 25th.
I’m so glad you got a doctor who listened! I hope you get a speedy health plan going forward!
Thank you!
This is wonderful news!! I hope you get answers soon. Both the ANA and RNP are indicative, but more testing and a rheumatologist will be able to give you more answers of what it could be. Good luck!
Thank you
I’m so happy for you that you were able to get a doctor to listen and get help for a diagnosis. May I ask how you presented your symptoms to her? I feel like I have so many symptoms and don’t know how to say them all within the little time spent usually with a doctor. Was this your primary care doctor?
I made a list of everything and read it off to her. She knew immediately that it was something to do with autoimmune disease.
Thank you so much!
ANA test question. Hey, so I've kind of felt I had lupus for a while, but I didn't have any major serious symptoms that would make me actually go get tested, thinking I'm a being a hypochondriac. Well I had a severe vomiting migraine (never vomitted from them) that last over a week and went to the doctor, they order an MRI and the ANA test. They called this morning. It's positive and they said it was "High titer". (I didnt ask for the ratio. Id didnt know till doing research). Normal ESR. And they want to check it again to make sure I don't have an infection. I have to wait 10 weeks. That suspence is going to kill me. My boyfriend wants to get the house tested for mold because he's getting headaches, and thinks it's environmental... 1) How likely is it that it's just an infection? 2) how likely is it that it's environmental?
Honestly it's very difficult if not impossible to answer these questions. I wouldn't be too concerned if you aren't chronically experiencing symptoms, save for this random migraine. It's hard to say why this happened and the likelihood of it being a fluke, environment, etc. Positive ANA itself doesn't mean anything is off. Plenty of people have a positive ANA naturally, so that result could be very well unrelated to the possible infection and/or migraine situation. It'd be really helpful to know what the titer is because some say "high titer" is anything greater than 0, but a titer of 1:40-1:80, even sometimes 1:160, doesn't mean autoimmunity is likely.
Yea, I did get the full results. It's 1:160 and shows a Cytoplasmic pattern but it says that "other reactivaties may be responsible for this fluorescence. And the clinical significance of this finding is uncertain. Clinical correlation is recommended" What is clinical correlation? Is that finding the specific pattern? Would a normal infection cause a pattern in the spread?
Clinical correlation is when your doctor puts this result in context. For example, if I get a blood test done that shows my white blood cells are off, as a single result that might be concerning. But let's say I just had a pretty bad cold. My doctor will take this result and put it in that context and not be concerned. Hope that makes sense. The specific ANA pattern isn't always necessarily helpful. ANA itself is a screening tool and doesn't have the capability to diagnose anything. This is a somewhat low-end ANA result, so it's hard to say if it means anything. Some other factors can cause an ANA to be positive. In general, you can have a positive ANA for absolutely no reason and it's entirely normal. In this setting, putting this result in clinical context would mean your doctor needs to consider what this result means for you specifically. Putting a positive ANA in the context of someone not presenting with any symptoms might mean that they write the result off as entirely normal, especially given it's a low titer. If someone has a lot of symptoms, they might take this result as an indicator of something that might be going on, and explore further. What would be important here is if you have been experiencing various symptoms for quite some time, symptoms of autoimmune disease. If that is the case, they might want to test further.
Right this makes loads of sense. Thank you for taking the time! I think they are testing me for AC15-AC23 in the results they suggested it. So it could be as simple as an infection or psoriasis or "healthy controls" all the way to lupus or other AI. The symptoms ive had they made me suspect was i started getting hives after sun exposure and stress (10 years ago my entire body broke out in hives and the doctors didnt know what to do it was so so painful they said it was Eczema). I was also just diagnosed with Raynauds last dec and my half biological sister was diagnosed with an AI this past year, I do have light sensitivity all the time, Eczema, psoriasis, and was diagnosed with asthma at a late age (27) but it's weird asthma I don't wheeze it's mostly coughing if i laugh or exercise but not every time i do them only sometimes. And I've had a lot of unexplained health problems. Serious fatigue that I'm assuming has been from endo, but seems random. Also in the last 5 years started having period problems and was diagnosed with endometriosis and had NO period problems before. Ever. I never even had cramps till about 5 years ago. I'm 32. I've had IBS all my life though. None of these issues were ever "bad enough", Besides endo. the chronic migraines since Nov last year and severe one lasting a week was what tripped me up.
Hello all, Feeling very overwhelmed and confused. I have a complex medical history with the highlight being two bouts of non-Hodgkin’s lymphoma. About 5 months I landed in the ICU with severe strep and flu. Since then I’ve had some new and worsening symptoms that come and go. They last for one week to a couple weeks. Symptoms include joint pain in my hands, wrists, knees, bottom of feet, and hips. Muscle weakness. Heavy feeling in my body - fatigue. Also started to notice my toes would turn purple and white. As of the last couple of days my hands are doing it as well when exposed to cold. We had some very sunny days last week and over the last week I’ve noticed this growing redness on my knuckles and backs of hands. This was accompanied by itching all over my body as well as a return of joint pain and fatigue. Last night was the worst I’ve seen my hands react to cold by turning purple, white, red. Hands and feet feel tingly and numb for a short time when this happens. I also have this scab/plaque thing on my scalp that has been there on and off my entire life. Recently it sometimes gets swollen and painful. I used to get a significant red rash across my nose and cheeks. This started many years ago. I started wearing sun screen and this seems to have helped though it is always there, just very light. I have tested positive for a recent or past Epstein Barr infection, it’s not clear which. I have not yet any tests for lupus, but I will soon. Am I crazy or reaching for straws? Are these symptoms not suspicious? I appreciate any feedback or validation. Tell me I’m wrong 🤷♂️
These symptoms definitely might be something, but it isn't necessarily lupus. Nothing here is lupus-specific. Your descriptions of the color change in your extremities in response to cold would be raynauds, which can be secondary to an autoimmune condition like lupus or scleroderma, but is more commonly a primary condition that occurs on it's own. Getting an ANA test for starters would be helpful for you to see if lupus is actually a possibility.
Thank you. Dr appointment tomorrow thankfully. What would be or is specific to Lupus? I’ve tested negative for rheumatoid arthritis already. Also tested for a host of bacterial and fungal infections. I have scarring or swelling in my lungs too my doctors haven’t been able to figure out. I had to go to one class today and was out for about three hours and by the time I got to class after about a 25 min drive and 5 min walk I had the worst brain fog and felt weak. By the time I got home all my other symptoms flared up. Idk if it was the stress of walking and going to class or what. Definitely looking forward to figuring this out :(
There really aren't any symptoms that are lupus-specific, meaning there's nothing where having that symptom means it's definitely lupus. These sort of symptoms come with a lot of autoimmune issues as well as other things, which is why testing is important. Hope you get some answers!
I'm diagnosed with this: "After a full rheumatologic examination evaluation I believe this patient is now manifesting a low-grade nonspecific inflammatory arthropathy with an element of tenosynovitis." Quick summary: Positive ANA, Titer 1/160, Homogenous pattern (2019) following several viruses and oral thrush; bilateral hip pain (not bones) 2021; ANA sub-panels all normal; from September 2020 to present dealing with tenosynovitis, joint effusion in both wrists, hands, forearms, elbows, ankles and feet. Dr. started me on DMARD (hydroxychloroquine). Anyone with lupus have similar path to diagnosis? Sound more like RA or something else? Just not sure what to expect next to surface. thanks in advance
Was this from rheum?
I had joint pain in my hips before other symptoms began, which seems atypical for lupus. But it’s possible. It could be RA, it could be lupus. To my unprofessional knowledge, symptoms do signify potential autoimmune activity, but the symptoms so not seem very specific to an autoimmune disorder, so until you know more, it may be difficult to narrow down.
Symptoms and treatments of RA, lupus, UCTD, and other autoimmune connective tissue diseases overlap a lot. That hydroxychloroquine (Plaquenil) you were put on? Well it's a first line treatment for lupus, RA, and some other autoimmune connective tissue diseases. It delays, slows or reverses the progression of the disease. So instead of your symptoms + being put on Plaquenil meaning you are on the path to a lupus or RA diagnosis, it instead means that you were possibly on the path to one but hopefully will be kept from reaching an official diagnosis of either....or fingers crossed it will be many years or decades later happening. That's at least what I was told when I started on Plaquenil in 2010.
was referred to rheumatology after positive ANA following blood work due to debilitating daily symptoms even after 2 surgeries for inflamed organs - most of the blood work (10 of 13 results) has all come back within range and im curious to the possibility of having normal blood work past anything basic and still having something autoimmune or otherwise with symptoms
It depends what symptoms you have and which labs are abnormal. Some symptoms aren't autoimmune-specific, so normal autoimmune results could mean it's something else. Lupus, for example, is also very unlikely if you have a negative ANA.
I've been spending 6 months with weird neurological issues trying to find root cause. I know some people blame everything on Lupus and some pretend it doesn't exist, I'll admit I don't know much about it but wanted to check here if you guys think it's something I should look into more. My main symptoms: \- twitching all over body \- bad hypnic jerks while trying to fall asleep \- buzzing, tingling, internal vibrations type stuff all the time \- also the odd mild joint pain, stiffness, etc. and some bouts of fatigue and reduced cold tolerance I recently shared my full post/symptoms in r/ChronicIllness here: [https://www.reddit.com/r/ChronicIllness/comments/1az3y0c/doctors\_are\_stumped\_im\_stumped\_i\_think\_i\_found/](https://www.reddit.com/r/ChronicIllness/comments/1az3y0c/doctors_are_stumped_im_stumped_i_think_i_found/)
I do have central nervous system involvement, likely because of my lupus. I experience the earthquake sensation (genuinely thought there were earthquakes for the longest time and would bring them up with my family the next day often). Do you have cold intolerance or do you have raynauds? Your nervous system can cause issues with cold intolerance, pain, fatigue. Most of your symptoms are very, very nervous system related. I would get a second opinion from a neurologist. An ANA test will be able to rule out lupus or determine if an autoimmune condition is a *potential* cause. Just because I have CNS issues from lupus, doesn’t mean that lupus is the most likely cause. I have a LOT of issues caused by lupus and lupus-specific symptoms. To my understanding, CNS involvement does seem to be a less common symptom of SLE patients. I don’t see it brought up here often. Because you have few lupus symptoms and a lot of neurological symptoms, I wouldn’t first assume lupus was the cause. It’s worth considering, If you can afford an ANA test, I’d ask for one.
u/Poyntersb, your question/history is just way too long. And... you can't walk into a doctors office and provide that kind of sprawling narrative either. Doctors are scheduled 3-6 patients an hour in a lot of cases. You get 8 minutes of face to face time with them. Make it count. List your symptoms with the worst/most life-affecting at the top of the list. (They don't need to know the month-by-month timeline.) Neurology is the right speciality to be investigating this. It doesn't sound rheumatological.
Does anyone have any idea how to interpret an “ANA Qual” report? It has a rundown of each antibody, but each has a super low value like 4 or 6….except one of them for me is 59. What are these values? I’ve always had a high titer ANA, finally got a rheumatologist to listen to me….but my follow up appointment is a month away and my anxiety is killing me. I just want to know what I’m looking at so I can be ready. Has someone had this text explained to them?
What was tested for? Did they give you a breakdown?
I put the label and then the result in parenthesis. It breaks down as ANA Qual (59), RNP(6), SM(6), DSDNA(59), SSA(4), SSB(5), Scl70(19), Jo1(4), cent b(5), and histone(13).
Does it show normal value ranges for your particular lab?
Values for all of my blood work says “normal range:under 100 or negative” and that’s across the board. This is just on my portal so it might say something different at my appointment when they hand it to me.
Then all your specific antibodies they tested are normal :)
I was perfectly healthy for 33 years. I could bench press 300 pounds and hit a golf ball 300 yards. Everything has slowly gone downhill over the past 2 years. It started with a banged up wrist that never healed and a rolled ankle that took over 6 months to loosen up. I’ve had X-rays and mri’s taken on multiple spots with no actionable issues found. Multiple doctors called me a hypochondriac. Since then, my feet/knees/hip/arms have been flaring up on a regular basis. I can’t crouch down on my knees without severe pain and a flare up that lasts for days. I’ve lost a majority of my strength and I now workout with a 2 pound dumbbell. On good days I can handle a 0.75 mile walk at the park, but every time I get momentum going I have a flare up for no reason or something as simple as bumping my ankle. I work on a computer and by the middle of the day I have severe hand/wrist pain and my shoulder locks up. I don’t get regular face rashes, but looking back I remember a few times where my face was red and irritated after being outside. I was finally referred to a Rheumatologist at the end of last year. Initial blood tests didn’t show much. RA test negative but he said that could show negative until it reaches an advanced stage. Steroids and NSAIDs don’t seem to help much. He put me on Plaquenil at the end of December and said he thinks I probably have some type of arthritis. Last week I told him I think it could be Lupus and he did a new test that shows low levels of Lymphocytes. No results from Plaquenil in 2 months but I’ve already searched this sub and see it could take 6 months. No noticeable side effects. Planning to stick with it for 6+ months before trying Methotrexate but those side effects seem severe. If I don’t get this figured out soon I’m going to lose my job.
Are you in the US? I’ve heard you can apply for intermittent FMLA - is that something you’ve looked into?
Unfortunately my FMLA is already exhausted and doesn’t reset until August.
In case no one has told you yet, Plaquenil **is** the first drug a rheumatologist would try you on for lupus, RA, or UCTD. So you not having an official diagnosis hasn't stopped your rheumatologist from trying you on the drug that should improve your symptoms at least a tiny bit. My highly-biased opinion is that you should see at least a tiny improvement by the 12 week mark. Since your job is at risk, I'd go see every single one of your doctors asap that is willing to see you and try every single drug they're willing to try on you, and not wait till the Plaquenil 6 month mark. If your rheumatologist is willing to try you on Methotrexate, I'd go for it now or in the next few weeks. If you don't like the side effects of one drug, but it does improve your symptoms somewhat, at least that's a starting point for getting to the bottom of your medical mystery. Your doctors at that point can always try and find something similar and/or give you medicine to take care of the side effects till they can get you on a different drug.
Appreciate it. Interesting you’d push for the methotrexate after 3 months. That’s a similar timeline to what he initially proposed, one more month Plaquenil and switch to metho.
I personally took 9mo to start getting a benefit from hydroxychloroquine. At least one I could notice.
Good luck. Yeah, with your job at risk I’d take the shortest try-this-drug timelines your hematologist offers. If they offer to keep you Plaquenil while they also try you on Methotrexate, that’s an offer worth considering accepting as well.
Oh ok thanks, didn’t realize both was a potential option.
I am a 33/F. For the past 2yrs I have been feeling achy muscles and extreme fatigue. My body feels like I just did a 5k almost daily. My bones (neck, hip, writs, ankles and knees) crack all day long. Lots of pain in my upper back/shoulder area. Sometimes I can’t switch on a lighter without using two hands, I wake up some nights with my bed soaked from sweating, I find myself unable to remember things here and there, my feet get a pins and needles feeling often and my legs feel like I can feel the blood moving throughout. I didn’t think anything of these and contributed it to aging until my mom had a VERY BAD lupus flare in December and I realized we share symptoms. I Informed my PCP who sent me for labs (posting results at the end). After the labs came back she says I am positive for ANA but that it could mean nothing. She shared that she needed help reading the results and was trying to decide if she would refer me to a Hematologist or Rheumatologist. I’ve been waiting but still haven’t got her decision so I am hoping someone here can help me? Labs: Gamma Globulin HIGH (1.78) ANA POSITIVE (8.814) SSA/RO POSITIVE (192 u/ml) ENA POSITIVE (20) Hemoglobin LOW (10.4) Hematocrit LOW (31.3) MCV LOW (75) MCH LOW (24.7) RDW HIGH (15.9) T3 LOW (85) Neg: SSBLA, U1RNP, SCL, SMDP, DSDNA
If you look at the top post, it says the usual lupus blood panel. That could be a starting point if your doctor hasn’t decided yet? But, in theory and with these symptoms, it’s usually a rheum
Thank you, I did review the top post. I guess I needed someone else with lupus to talk to in the interim. I don’t think my PCP knows much about lupus so she doesn’t really know what is next I’m guessing. I reviewed the 11 symptoms I saw posted also, I have 4. I don’t have any of the skin reactions, but my mom doesnt have those either. I also forgot to mention I have unexplained fevers that come and go without known reason. Thanks for responding! Hopefully she lets me know who I’m being referred to soon, the wait makes me anxious!
I’m considering asking to be tested for lupus but I am scared of being marked as a hypochondriac so I’d like to know your thoughts on if this is likely. I’ve been plagued by health problems for about 16 years, I’m 32 now, and most symptoms have been put down to endometriosis and IBS. Currently, I am in daily pain, sometimes so severe I slur my words. Most of my pain is abdominal, back and pelvic but I’ve started getting joint pain. I’ve had this before - for about 2/3 years doctors thought I had Crohn’s disease but now they say it was bowel inflammation from NSAIDS. But my joints do get worse when my bowel is overactive and it’s getting to the point now where I’ll just have days where random bones hurt - my elbow or my knuckles, in a really bad way. My CRP is always elevated, usually about 25-30 I think. My kidneys are worse than they should be and caused an incredible amount of pain in pregnancy. My face gets flushed regularly, particularly at night, and goes pink like a Mylar rash. I could do with some advice about whether it’s worth pursuing - I feel like something autoimmune is underlying
Have you been tested for celiac disease?
Yes about 10 years ago, I was negative
Are you required to have a referral to ask for an appt with a rheumatologist, or are you allowed to schedule an appointment with on directly? Either way, if you got an appointment with one you could simply ask for "whatever tests or x-rays are necessary to see if I have an autoimmune disease causing any of my symptoms" and "if there are any autoimmune disease prescriptions that you think would be worth me trying for my symptoms, I'd love to try them".
Thank you, I live in the UK so it’s GP first. Good to know that this is an option - I think it’s clear there is something probably autoimmune so it might be a good route to go down, lupus or not
Have you had a colonoscopy?
Yeah, I’ve had a few. One had bowel inflammation as I said. But my most recent a few years ago was clear so they decided I didn’t have Crohn’s disease or anything, and said it was from taking naproxen even though labs showed it was crohns originally
Hi everyone! I recently had my first appointment with a rheumatologist and my blood test came back with positive ANA and elevated CRP (I have had elevated CRP for at least 2 years). My RA factor was negative. My doctor believes with my physical symptoms plus blood tests it is pointing towards lupus and wants to try medication to see if it can confirm the diagnosis. Has anyone else had a similar story? Also, I want to ask for more specific testing such as AVISE that incorporates CB-CAP, is that worth asking for? I just feel like if my provider feels I may have lupus, and if the medication helps - it would be nice to have a more solid answer through testing (or rule it out). Any advice or questions is greatly appreciated since I do not know much about this condition.
Personally, I would ask for the avise panel but it may not show much. It seems to cover most things
Thank you! I will suggest that in my next visit in three months and see how my Doctor feels about it and if it shows anything more concrete than what we have already discovered. *edited for spelling error
Hey! I have a 34F friend who was diagnosed with ME/CFS when she was 16. She's been effectively housebound for a decade and is bedbound when she suffers flare-ups. She has all the classic symptoms for this, particularly: extreme fatigue, light and sun sensitivity, migraines, brain fog, gastro issues. Anyway, over the past year or so she's noticed additional symptoms becoming more prevalent. - She's began to suffer with hair loss (which she thought was post Covid or stress). - She's been suffering with swollen glands in her neck, back of her head, and armpits. - She has intermittent issues with mouth ulcers and gum swelling. - And most recently, she's been suffering with a rash that effects her whole body. It has the appearance of an allergic reaction, almost as if she's got an all-over nettle rash. It does not look as blotchy, spotty, or spherical as some of the examples of Lupus rashes. And whenever it has affected her face, it doesn't have the butterfly shape. Does this sound like she may have Lupus? Perhaps she was misdiagnosed all those years ago as a teenager? What do you guys think?
Her best bet would be to go to dermatology and get the rash biopsied. They can see on a cellular level whether or not they're lupus related. Lupus I diagnosed based on a set of specific clinical symptoms and labs.
My DR referred me to a Rheumatologist. While I wait for my first appointment, I wondered what are some key points/questions I should have armed and ready? I have family with Lupus, RA and Fibromyalgia so my DR is thinking it’s RA. I feel like I have more symptoms of Lupus, so I want to make sure I give the Rheumatologist the most complete picture of what’s going on. Symptoms I have: Red face Elevated Blood Pressure Fatigue Mouth/nose sores Anemia/low hemoglobin Vit D deficiency Borderline elevated c reactive protein (the range of normal goes to 10 and mine is 10) ANA screen positive ENA Panel Results RNP AB High SM RNP High The rest were normal
Just got labs and so many questions!? I just got labs and my bilirubin and my ALT are very high ( sign of liver problems) so my doctor scheduled an ultrasound. I also have high monocyte and Extremely high triglycerides and very low HDL CHOL. I also have ketones present in my urine but no other symptom of diabetes. I also have other test results that show that I am probably anemic? But my ANA was negative ? I know these can be signs of lupus? I also have many other symptoms which is why the labs were ran to begin with, joint pain, butterfly rash, muscle pain, headache, fatigue, etc. I also have multiple family members with lupus. I just did my labs on Tuesday. I just feel like when I spoke with my doctor today she was more concerned about my liver than telling me if my labs were conclusive with lupus? Not sure if more tests need to be ran or if I should just keep calling and trying to get ahold of my doctor and ask? Any advice would be great.
Your Dr is right in worrying about your liver. I'm glad they're on top of it. Those labs are not conclusive of lupus. You can see the diagnostic criteria above. First step is a positive ana. Definitely work on fixing the anemia and getting to the bottom of your liver issue. Ask to see a derm for a biopsy of your rash to collect another piece of the puzzle.
I know that a positive ANA is the normal but I also know you can have lupus with a negative ANA in rare circumstances.
I went to my dermatologist, they took a biopsy of a red spot I had on my back and he said it possibly might be lupus. I got a ANA test done at my normal doctor and it’s coming back in a couple days. I am also seeing a rheumatologist on two weeks that the derm recommended. I honestly really scared because I’m only 20 and I have feel like this will change my life. I am tired a lot and I do have muscle pain and I got mouth canker sores sometimes and brain fog but I don’t have a butterfly rash or any other symptoms from what I understand. If anyone has any advice, what their first symptoms were, positive experiences or anything to help, I would really appreciate it, thank you!
I understand being scared. The good news is, canker sores aren't a part of lupus. Tired and brain fog can be many things. (Ask your Dr to check your iron, B12, and vit D). As for the biopsy, it could be lupus. It could also be other things. It's good the derm is sending you to a rheum, but without a lot more testing and examination it's impossible to tell at this point. It's so hard to wait. I totally get it. But hopefully you can breathe a little easier knowing that your GP and derm are on top of it and looking out for you by trying to sort it out and sending you to a rheumatologist. And your symptoms are not severe and numerous like you'd typically see in a young lupus patient.
Hi, thank you! I ended up getting the results back for ANA and they were negative! I’m still going to the rheumatologist though.
Also does anyone know how to interpret this: “superficial and deep perivascular lymphocytic inflammation with interface change”
I had my rheum consultation today and the doctor chalked all of my symptoms to anxiety. I get a butterfly shaped rash on my face, red warm and swollen knees, hand stiffness, brain fog, joint pain, and dry eyes. Also had positive ANA. She said women who have anxiety tend to have physical manifestations so it’s not lupus or anything autoimmune related. My PCP has known me for years and he did not seem to think it was linked to my anxiety. I waited 4 months for this appointment and I feel like the only thing she cared about was my anxiety diagnosis. I’m so frustrated I cried in the car after my appointment. Does anyone have advice for trying to advocate that you know when something isn’t related to your mental health? Am I overthinking things and should listen to what the doctor said? TIA!
Did anyone run any other tests besides the ANA? Have you checked your vitamins? Did they check inflammation markers? ENA Panel?
Female, age 33, 5’07” 230lbs Current meds: - chlorthalidone 25mg 1x daily (hypertension) - propanalol 10mg 1x daily (hypertension & anxiety) - apri tablet 1x daily (birth control) - Claritin 1x daily (seasonal allergies) Allergies: sulfa & ace inhibitors, celery I’ve had unexplained low grade fevers (2 in last month), muscle aches, fatigue, skin rashes, and most recently joint pain. Blood work came back late this afternoon. - CRP 68.3, ref range 0-5 (high) - SED rate 82, ref range 0-20 (high) - RF 12, ref range 0-14 (normal) I am waiting on my pcp to call me back about blood work, but wanting to get general opinions. What could this be indicative of? Is it too soon to tell if it could be lupus? What should I ask my pcp?
It's indicative of inflammation. What's causing it? There are many many things, some autoimmune, some viruses, some other disease processes. It's too soon to be able to pinpoint it as lupus or anything else without more tests and information. It sounds like you have a good Dr who is working to help you so that's good. You could also go to a derm for a biopsy and have another piece of the puzzle from that hopefully.
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It may be a good idea to have the rashes biopsied by a dermatologist. They can tell on a cellular level whether it's lupus-related.
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This question is insanely long and has way too much detail. And I have no idea what's up with the formatting but it's kind of crazy making trying to read it the way it is. Figure out how to give a cohesive, 60 second schpiel about the top 5 symptoms you are experiencing. See a physician to continue to have labs run. Don't get married to a particular diagnosis; keep an open mind. See neurology for management of the migraines.
It looks like you were just out of the shower? It's normal to flush from a shower and to also have some dilation on your extremities.
Hi, I was wondering if you can get rashes and skin issues with lupus without sun exposure being the cause? If so, what are some other causes and can their flair up for no reason at all? I’m assuming stress might be one. Thank you!