Undiagnosed Autoimmune Disease - No one will listen to me

Posted by lexaprobiotic @lexaprobiotic, Sep 2 2:27pm

I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor will ever give me a diagnosis or do further testing to determine one. I have been to emergency care, undergone several tests for indicators, and seen several specialists, but for some reason they are all clueless despite their proficiency in medicine.

I have bad joint pain, sudden bouts of severe itchiness, occasional numbing in my left arm (which isn't common but not unheard of), severe fatigue, swelling in my joints (specifically in my fingers), and the swelling of my lymph nodes. I know this is immune related because taking an antihistamine like Benadryl normally clears it up for a short time. My symptoms started almost immediately after I got COVID for the first time a couple months ago. The most likely causes are Lyme Disease, Rheumatoid Arthritis, Lupus, Sarcoidosis, or another autoimmune disease. (I say Lyme Disease because I was bit by a tick a few weeks later but my symptoms were pre-existing that.)

I feel like this is important, but no one is taking me seriously. I go in, get tests done, my results are fine, and they send me home saying not to worry about it. I am told I don't have any of the usual markers or indicators, and that I'm young and healthy, but how can I not worry when my knees buckle with random joint pain, or I'm trying not to sleep the day away because I'm so tired and can't get out of bed?

I don't know what to do right now honestly. If anyone with similar or the same symptoms could give input on their own diagnoses that would be great. I could really use some advice or ideas on how to get a diagnosis so I can be treated. I have a bad feeling this will only become worse as I start doing more activity.

Thank you for taking the time to read this.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Hello @lexaprobiotic, Welcome to Connect. Sorry to hear that you've seen so many doctors with no answers. Your symptoms sound like they could be a number of different conditions. My first thoughts were polymyalgia rheumatica (PMR) which I have had two occurrences and it is crippling when you first have it and don't know what's going on. Also, there are many other conditions that mimic PMR. Hoping other members can relate to your symptoms and share their thoughts or suggestions.

You mentioned that you've seen several specialist. Have you seen a rheumatologist? Are your symptoms constant or do they come and go during the day/night?

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Hi @lexaprobiotic – Some of your symptoms do sound like Lyme disease and basic tests done in most health care settings do not detect many of the infections. I might see a functional medicine doctor/naturopath and see if they can run testing. I agree with you that since you had COVID your immune system may be fighting against itself. Have any of your doctors listened to your suggestions and done testing for your other ideas of what it could be?

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@bustrbrwn22

Hi @lexaprobiotic – Some of your symptoms do sound like Lyme disease and basic tests done in most health care settings do not detect many of the infections. I might see a functional medicine doctor/naturopath and see if they can run testing. I agree with you that since you had COVID your immune system may be fighting against itself. Have any of your doctors listened to your suggestions and done testing for your other ideas of what it could be?

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They've tested me for indicators of RA, but they said I wasn't likely to have RA without the genetic markers. I still believe that it could definitely be that, but I can't be sure without seeing a Rheumatologist.

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@johnbishop

Hello @lexaprobiotic, Welcome to Connect. Sorry to hear that you've seen so many doctors with no answers. Your symptoms sound like they could be a number of different conditions. My first thoughts were polymyalgia rheumatica (PMR) which I have had two occurrences and it is crippling when you first have it and don't know what's going on. Also, there are many other conditions that mimic PMR. Hoping other members can relate to your symptoms and share their thoughts or suggestions.

You mentioned that you've seen several specialist. Have you seen a rheumatologist? Are your symptoms constant or do they come and go during the day/night?

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I saw an ENT when the lymph nodes behind my ears were swollen to the size of hazel nuts, however it was brushed off as a reaction to some type of infection and the resulting size was due to scarring. Due to your suggestion, I read up on PMR and found that hardly any of my symptoms match. I am under 25 so it would be an extremely rare experience, but I appreciate your ideas. My symptoms are completely random and never seem to be specific to a certain time. It could be three o'clock and my leg itches, or it could be ten thirty and the joints in my fingers feel like they've been smashed with a hammer. It doesn't surprise me that it's hard to diagnose, but it is disheartening.

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@lexaprobiotic

I saw an ENT when the lymph nodes behind my ears were swollen to the size of hazel nuts, however it was brushed off as a reaction to some type of infection and the resulting size was due to scarring. Due to your suggestion, I read up on PMR and found that hardly any of my symptoms match. I am under 25 so it would be an extremely rare experience, but I appreciate your ideas. My symptoms are completely random and never seem to be specific to a certain time. It could be three o'clock and my leg itches, or it could be ten thirty and the joints in my fingers feel like they've been smashed with a hammer. It doesn't surprise me that it's hard to diagnose, but it is disheartening.

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I did see a condition that comes and goes and has some of the symptoms you have. Does this one sound similar?

"People with palindromic rheumatism usually have no symptoms between attacks. This is different from other types of inflammatory arthritis, such as rheumatoid arthritis, as people with these conditions will have joint problems most of the time.

During an attack of palindromic rheumatism, the joints involved – and the tendons and area around them – will feel painful and stiff, and may look swollen. They might also feel tender and hot, and the skin over your joints may look red."
— What is palindromic rheumatism?: https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

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The ANA test could help with dagnosis.

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Autoimmune diseases are very hard to diagnosis in some people. My bloodwork comes back positive for autoimmune disease but when the specialist does further testing and everything is negative! I have been battling this for years. Like you I recently had Covid and all my symptoms intensified, If you have access to labs online be your own
advocate find out what blood work they have ran. Look for an ANA and what you level is. Hopefully they ran a C-Reactive Protein. Find new Drs if you have to. Also for me I can say that following a anti-inflammatory/ low fodmap diet has also helped.

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@johnbishop

I did see a condition that comes and goes and has some of the symptoms you have. Does this one sound similar?

"People with palindromic rheumatism usually have no symptoms between attacks. This is different from other types of inflammatory arthritis, such as rheumatoid arthritis, as people with these conditions will have joint problems most of the time.

During an attack of palindromic rheumatism, the joints involved – and the tendons and area around them – will feel painful and stiff, and may look swollen. They might also feel tender and hot, and the skin over your joints may look red."
— What is palindromic rheumatism?: https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

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That sounds incredibly similar, I'll have to mention it to my provider. Thank you for your dedication to my problem!

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@laneyh

Autoimmune diseases are very hard to diagnosis in some people. My bloodwork comes back positive for autoimmune disease but when the specialist does further testing and everything is negative! I have been battling this for years. Like you I recently had Covid and all my symptoms intensified, If you have access to labs online be your own
advocate find out what blood work they have ran. Look for an ANA and what you level is. Hopefully they ran a C-Reactive Protein. Find new Drs if you have to. Also for me I can say that following a anti-inflammatory/ low fodmap diet has also helped.

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Thank you for your insight, it has been immensely helpful. I'll do more research and talk these suggestions through with my doctor!

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Your symptoms sound very similar to mine… You may want to look into Mast Cell Activation Syndrome. This link is to a guide for any doctor to begin the diagnostic process…it may also be good to have all your vitamin levels checked. It is also very common to have a gene mutation that impact absorption of vitamins…but easily treated…ask for a MTFHR gene test.
https://www.ehlers-danlos.com/wp-content/uploads/MCAS-Primer-for-the-Gastroenterologist.pdf
As for itch, which is a super common symptom of so many medical problems…I take an otc supplement, Beta Alanine, 750 mg kills the itch for me…someone on a Facebook group for itch related issues discovered it…it is typically a preworkout supplement but at a higher dose…I buy the NOW brand on Amazon.

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@moylandavis

Your symptoms sound very similar to mine… You may want to look into Mast Cell Activation Syndrome. This link is to a guide for any doctor to begin the diagnostic process…it may also be good to have all your vitamin levels checked. It is also very common to have a gene mutation that impact absorption of vitamins…but easily treated…ask for a MTFHR gene test.
https://www.ehlers-danlos.com/wp-content/uploads/MCAS-Primer-for-the-Gastroenterologist.pdf
As for itch, which is a super common symptom of so many medical problems…I take an otc supplement, Beta Alanine, 750 mg kills the itch for me…someone on a Facebook group for itch related issues discovered it…it is typically a preworkout supplement but at a higher dose…I buy the NOW brand on Amazon.

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Keep in mind that true MCAS is similar but different than what we as Long Haulers experience. It basically takes a bone marrow test to diagnose true MCAS. My labs were all normal but my allergist pegged it for me. Histamine Intolerance with Mast Cell involvement. Walking into a doctors office with an internet diagnosis in hand can backfire the Physician Ego. My Allergist is an exception to that rule thank goodness.

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Your symptoms are similar to mine. My allergist pegged my flushing syndrome as Histamine Intolerance with Mast Cell involvement. He put me on Xolair Shots and I responded well. I could have been better a year ago but my PCP put me on Lipitor in June 2021. He ignored my symptoms as LH Covid BS, whiney, faker and turfed me to my allergist to manage my care. I ended up with Severe Rhabdomyolysis (or some other auto immune myositis that can be statin induced) and in Kidney failure headed for dialysis. Then he quit as my doctor as he had the labs in his hands that showed kidney failure. No providers except my allergist, are bothering to help me figure out the diagnosis but he doesn't really know in detail what should be managed by a Rheumatologist. Its been hurry up then wait 3 months for the next appointment. With your symptoms you should consider seeing both an Immunologist and Rheumatologist that will work together as a care team to address problems. Of course dont laugh, because I'm still trying to get that combination. I have a great allergist. I just need the referral to Rheumatology to go through.
I've been at this for 2 and 1/2 years but the LC symptoms were masked/mimicked by a non covid, provider induced problem that should have been easily identified by reviewing my med list. Don't dismiss factors outside of Long Covid. I could be done with Long Covid, IDK because the problems I have now could be statin induced or complicated by Long Covid. I just keep hoping the Rhabdo will finally resolve and nothing else will pop up. Fat chance!

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