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Tips for Getting a Proper Diagnosis of an Autoimmune Disease
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?
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I suffer from bouts of dizziness, unsure if it is tied to my Hashimoto's. However, I have been to a neurologist and a ENT about it and neither doctor could find a neurologic or inner ear condition that would be making me have dizzy spells.
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1 ReactionThank you that was my next step.
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1 ReactionMy daughter has been dealing w/what was originally DX as Hashimoto Disease & now her antibodies are very high. She’s asked if my side of her family tree has had any reported autoimmune diseases. Not to my knowledge. Her dad was DX w/Alopecia the last five years of his life. Can autoimmune diseases be genetic?
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1 ReactionWelcome @mmleal, Yes autoimmune diseases can be genetic. Here's some information on the topic.
"Autoimmune diseases do tend to run in families, which means that certain genes may make some people more likely to develop a problem. Viruses, certain chemicals, and other things in the environment may trigger an autoimmune disease if you already have the genes for it."
-- Autoimmune Disease Symptoms:
https://medlineplus.gov/autoimmunediseases.html
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4 ReactionsHi,
Twelve years to get a diagnosis. A trip to ED with high BP which couldn't be controlled and the right Dr at the right time and bingo Autonomic polyneuropathy. What a relief to know I wasn't going crazy and there was something wrong with me. I now have a better understanding of all the symptoms I get and why. One big negative is there is no cure and no treatment. I mainly have bad days with the very rare, good few hours thrown in to give me hope that it is not all downhill. It interferes with my BP and makes it uncontrollable at times while usually keeping it high. It can suddenly drop to what is described as normal and I get a few hours of a great moments until it raises again. It is fair to say it has a strangle hold on some of my organs and plays hell with most of the rest. I'm lucky in that is has only hit the heart once so far and it was just a tickle to let me know it could! I get throat restrictions from time to time which restricts the ability to get sufficient air into the lungs and leaves me breathless. It completely controls my bladder, bowels and digestive system and plays havoc with the brain, memory, cognitive abilities, eyes and my stability/ vertigo.
While I'm learning to deal with some of the symptoms it is more frustrating to not have control of yourself when you want. I just have to go with the flow as and when I can.
So far, the only hint of help has been to increase the salt intake, which I can't as I'm CKD and salt is a dirty word for them.
Cheers
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1 ReactionResearchGate has a number of peer-reviewed papers on autonomic polyneuropathy. One needs a login account to access and the audience is research scientists, so can be a bit tedious to wade through. The one on transcranial magnetic stimulation of coal miners with the condition was interesting. Coal mining is hazardous from a few standpoints.
Have you experience with Mixed Conettive Tissue Disease?
Hi @charlottet, I don't have any experience with Mixed Connective Tissue Disease but there are quite a few members that do. Here is a link that shows the discussions and comments by members for MCTD - https://connect.mayoclinic.org/search/discussions/?search=mixed%20connective%20tissue%20disease.
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1 ReactionThanks very, very much, John. I am very pleased that you passed on this information. I know it will be most helpful.
Charlotte
Ontario, Canada
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1 ReactionI was kind of diagnosed at Mayo But in those days, going back over 10 years, everyone looked for a positive biopsy for GCA and mine was never positive, but my Sedimentation rate and CRP very high and I had just gotten over poly myalgia Rheumatica. I was treated with high doses of Prednisone and I’m still on Dext. And Actemra.
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