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Mentor

Tips for Getting a Proper Diagnosis of an Autoimmune Disease

Posted by Becky, Volunteer Mentor @becsbuddy, Jan 4, 2021

Getting a diagnosis can be a real challenge indeed! It may be one of the most difficult challenges in your health journey. I received some information from the American Autoimmune Related Diseases Association that gave some good information that will certainly be helpful. I thought that it was a long time before I had a diagnosis, but, on average, autoimmune patients see at least four different doctors over a 3 year period before they finally get a diagnosis.
Some of the tips AARDA suggests are:
1. Ask the hospital if there are doctors on staff who treat autoimmune patients
2. Ask for a thorough clinical examination. Ask for a copy of laboratory results
3. Get a second or third opinion, if necessary. Symptoms can be vague and not visibly apparent, so doctors don’t always connect them to autoimmune diseases.
4.Symptoms often seem unrelated. It is important to make a list of every major symptom you’ve experienced. List and date the the symptoms that are of major concern to you. Also keep a daily journal of symptoms. Take this list to appointments.
5.. Partner with your physicians to manage your disease. One doctor should become the main provider to manage medications

Have any of you experienced a long journey before final diagnosis? What worked for you to try to speed things up?

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

diverdown1 | @diverdown1 | Apr 29 7:38am
In reply to @mkempson42 "Ì don't qualify for medicaid even though I'm unable to work and just started to receive..." + (show)
@mkempson42

Ì don't qualify for medicaid even though I'm unable to work and just started to receive only a small in unemployment. I'm quite certain I have Addison's disease and have been going misdiagnosed for a very long time now. I suspected this a few years ago and have been trying to manage this the best I can but the episodes where I loose consciousness are becoming more frequent now and its kind of scaring me when when I start to come out of it and inhale a big breath of air like I had stopped breathing. I'm all by myself and have no support system....

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Depending on your state, I would look into the ADA and any resources that you can find. If you are receiving unemployment due to not being able to work due to your illness, you may qualify for benefits under social security. I have not been able to work for 3 years. I have Long COVID. I am in school, online, and living off student loans. I hope to find a remote job when I get my MSW. I go to therapy at a place that has a sliding scale and state grants for people like you and me. Hang in there.

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mckitty357 | @mckitty357 | Apr 30 6:47pm

I had to collapse in the street, near death, in order to be diagnosed with Adrenal Insufficiency. I survived two adrenal crisis, IN THE HOSPITAL, without any investigation or diagnosis. My current endocrinologist is the only one of many who knows more about adrenal insufficiency than I do.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 1 8:38pm
In reply to @mckitty357 "I had to collapse in the street, near death, in order to be diagnosed with Adrenal..." + (show)
@mckitty357

I had to collapse in the street, near death, in order to be diagnosed with Adrenal Insufficiency. I survived two adrenal crisis, IN THE HOSPITAL, without any investigation or diagnosis. My current endocrinologist is the only one of many who knows more about adrenal insufficiency than I do.

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@mckitty357 that sounds awful and scary! Did you really have to explain adrenal crisis to the doctors and tell them how to treat you? You are the 2nd person today who has shown such courage in the face of adversity! Thank you! Women need to take care of the medical probs!
And welcome to Mayo Clinic Connect! We’re really glad that you signed on!

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persistentc | @persistentc | May 2 11:17am
In reply to @rubonimo "I have just been referred to a third rheumatologist. I have all over muscle pain. I..." + (show)
@rubonimo

I have just been referred to a third rheumatologist. I have all over muscle pain. I have joint pain. I have chronic headaches (migraine) numbness and tingling in hands, arms, feet, legs, and face. So far they have ruled out Lupus, Rheumatoid arthritis, Antiphospholipid syndrome. No answers for a diagnosis. Unfortunately my pain medicine(Tramadol)does virtually nothing. I am in pain constantly. Praying this new physician can help me.

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Ask them to run a test for HLA-B27. If positive, you may have Axial Spondyloarthritis. I was just diagnosed with this last fall. I suffer the same symptoms you describe and have also been diagnosed with RA and FMS as well as Peripheral Neuropathy.

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