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 | 2 days ago

In reply to @mkempson42 "Ì don't qualify for medicaid even though I'm unable to work and just started to receive..." + (show)

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.

mckitty357 | @mckitty357 | 18 hours ago

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.