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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 have had similar sounds like Fibromyalgis
Best to see a RHEUMATOLOGIST
read up on it
Many systems are affected
Good Luck!!
Rhoda
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1 Reactionmy liver enzymes were elevated for a couple years and my primary doc was not concerned, but my colonoscopy doctor was quite concerned and had me tested for eve ry kind of liver disease, which was a very thorough testing and diagnosed primary biliary cholangitis whih has caused me to develop stage four liver disease
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4 Reactionsmy liver specialist is referring me to rheumatoid arthritis doctor for severe pain all over my body
i sure hope she will prescribe pain killers cause i quit those things last year cold turkey
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2 ReactionsConfirm that your rheumatologist is a medical DOCTOR. The first one I had was not and her lack of ability/interest could have cost me my life. I commented on this under GCI a few months ago.
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4 ReactionsCorrection GCA
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1 ReactionIt did not take me that long to get a diagnosis even though I have very rare autoimmune disease (Anti-mag) that many neurologists are unfamiliar with. My original neurologist suggested I go to university, so I went to Johns Hopkins in Baltimore where they gave me the diagnosis and then I got a second opinion at Mayo in Rochester where they did a lot of test over 3 day period and confirmed the diagnosis - I preferred Mayo. If you can go to one of these I think you stand a better chance of getting an accurate diagnosis with a plan for treatment. Good luck.
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6 ReactionsYou are very fortunate if you have access to the best tertiary care centers and
university hospitals. Many patients don’t by reason of insurance, geography
or medical indifference. I have spoken to some acquaintances who were
uncertain if they had been seen by a physician or PA.
The physician shortage is apparent when you follow the comments here
concerning long waits and hoops for managed care and pre-approvals.
We all need to learn how to minimize pharmacy costs. Be your own advocate.
Ask questions. A good physician welcomes second opinions in difficult diagnoses.
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3 ReactionsIt sounds as if the liver disease is now cancer ?
The Rheumatologist can make a diagnosis of why you have widespread pain
Are you under the care of an ONCOLOGIST?
You need good pain management
Please Check out ;
https://en.m.wikipedia.org/wiki/Fibromyalgia
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1 ReactionMost definitely and has been well over 10 years. IMO/Experience, bw/tests should be done during a flare for more accurate results. The right doctor 100% makes a difference.
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2 ReactionsIs anyone Experiencing, bouts of dizziness with Hashimoto's or Primary Biliary Cholangitis, or seasonal allergies?