← Return to Undiagnosed Autoimmune Disease - No one will listen to me

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@lexaprobiotic

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.

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Replies to "I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor..."

Lyme is likely. Do more Lyme tests than the standard antibody test.

Mold illness also behaves like Lyme. Take it seriously. There are mycotoxin tests you can order online.

Sorry to say I’ve had similar experience with Big deal doctors- “so you’re aging and have arthritis- what did you expect?!
Mayo group has helped me realize it’s my COVID Vax challenged immune system!
What to do???🥲🙏
To do??

My daughter is 42. She has hives, which now turn into bruises/marks when they clear up. She has terrible and random joint issues. One day, she may wake up and can't move fingers on one hand, or can't stand on a knee. It may last a few days, and then goes away. Iowa City has tested her, and determined she has "some kind of autoimmune disorder (but they don't know what). I've seen some of her test results. Some of them are off the charts, they are so high (like for inflammation). She is currently on 4 different antihistamines, daily, just to keep the hives away (and it doesn't always work), and keep from digging her skin to death. I was recently diagnosed with Sarcoidosis. We are trying to get her Dermatologist to do testing for that (her regular doctor told her it is rare and isn't proceeding). It can run in families! We will keep advocating, until she gets answers, but she has been suffering for well over a year. It is so frustrating. Mayo can't take her right now. I am praying that if she gets diagnosed with Sarcoidosis at Iowa City, she can get accepted to Mayo on that basis.

Blessings all!😇🙏🌈

So sorry to say I’ve had same symptoms Andy no doctors who gets it!
I’m going to try another neurologist- last one just had me look up and down etc. and said”no problem”
I know it’s related to COVID ax alerting my immune system!
Keep trying. Good luck!😇

I contracted Covid at the very beginning of the pandemic. Former personal trainer, zero pre-existing conditions. Convinced Covid has changed my blood vessels. In the two years since I have suffered from severe fatigue- slowly abating- and a host of other conditions. All of the ones you mentioned and more. The numbness stopped 6 months in, the severe itchiness has not gone away. Lymph nodes are back to normal etc. Forget Lyme disease, you were bitten weeks after. I’m now two years out and I’m mostly back to normal. Fatigue has improved 80%, I can exercise at a similar level. Don’t get discouraged with Dr.s and all tests revealing squat. Covid has affected us at a cellular level and these weird manifestations are just the response. Try and stay positive and keep putting one foot in front of the other while eating well, keeping a sleep schedule and move your body every day as best you can. Eventually the scientists will tell us why we all suffered these bizarre side effects and what might be done to rid us of them for good.

Take good care.

Sorry for your problems. Has your family/general doctor ordered the basic blood tests for inflammation and if so, did they show anything? Have you ever had a Prednisone Z Pac ordered; did it help?

I just happened to peak in today, not really expecting anything. But when i heard prednizone, wow! That is my experience too! The difference is that my specialist told be to give it a try. I felt like a humannagain for 3 days. That was when he said you have an idiopathic autoimmune disorder. Sadly in stated crawling the walls, so i had to stop. And once again i am on steroids to treat bronchitis following covid. I am not well, but in still feel like a human again. The issue is that this information never gets discussed among my variety of specialists, or it. Gets poo poo ed. I realized this week that im have been hiring carpenters all this time, and they auto see the solution as a hammer and a nail. But over 35 years now, i just get sicker and sicker. I gotta find me a general contractor!

That is really interesring. I have been through the same thing whereas I have symptoms just as you do with an addition of nerve pain. Bilateral carpal tunnel and many other nerve issues in neck, legs, arms etc. My doctors have tested for each issue separately and have given diagnoses such as neuropathy, arthritis, radicalopathy, and more...but if you take many of the issues/diagnoses and put them together they seem to fall under one diagnosis. For me I was thinking MS in my case...but they say no. For that I am happy...but I totally understand your point. I have even expressed to my doctors (and specialists) ..with all of these issues... it just seems like something is being looked over. And if not it seems like something is definitely brewing. They always act as if I am just having anxiety.

I had autoimmune markers in labs by neurologist who sent me to the most obnoxious rheumatologist who said I was fine and walked out. I was left sitting on the table with my feet actually turning blue from neuropathy and hanging over the table for so long! I asked to see another doctor in the practice and they said it wasn't allowed!!!