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.

Marcy | @mkempson42 | Oct 31 4:15am

In reply to @elisabeth007 "talk to a social worker" + (show)

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....

deborahyost3 | @deborahyost3 | Oct 31 3:51pm

In reply to @wendy517 "What is LDN? Congrats on finally getting someone to listen and get the right diagnosis." + (show)

Read up at LDNRESEARCHTRUST.ORG

It is a novel anti-inflammatory often used with autoimmune diseases and chronic pain.

Marcy | @mkempson42 | Nov 5 10:08pm

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

For over a month now I've been scrubbing my fingernails constantly because they look dirty and have this brown stain on several of them that I thought was from hair color and wondering why it won't scrub off. It's because it's not a stain from hair color but is a uncommon symptom of Addison's disease. And even given this new finding i still don't qualify for insurance at this time and could be another month before I hear anything and even then it's not guaranteed....

marlyandtucker | @marlyandtucker | Nov 8 1:40pm

Is pseudo gout an autoimmune disease. I am seeing a rehmatologist that has prescribed predisone, coccinellids andhydroxychloroquine...none of them have helped. The swellingwent from my left hand and into my right hand, knees and one ankle along with shoulder pain. Any ideas?

mandy79c | @mandy79c | Nov 17 9:39pm

In reply to @mkempson42 "For over a month now I've been scrubbing my fingernails constantly because they look dirty and..." + (show)

You need to request a state hearing for the Medicaid benefits if they denied you. If you’re not working and receiving short or long term disability, you should qualify. You could also look into Obama Care if all else fails. I hope you get answers and insurance assistance asap. Praying for you.

Lara K | @larak | Nov 18 8:29am

In reply to @lkirnbauer "I too have Hashimoto’s and hypothyroidism. I have researched on my own and found that eliminating..." + (show)

Not only are they not helping, but they'll treat you like you are insane if you do anything (other than lose weight) to help yourself.

Someday, I will snap and say:
"Look, bud. If I believe that chicken I sacrificed is preventing additional eczema, dry eyes, joint pain, and hair & vision loss, I'm gonna keep sacrificing chickens. Not like you're offering me an alternative.

Oh, and I need a strand or two of your hair. Hold still."

🤣🤣🤣

But seriously, doctors are all so down on special diets, eliminating food intolerances, supplements, etc. If those things help and doctors don't, people are going to try them.