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Finding out what I have.
I was diagnosed with MS several years ago. I had a high very positive titre 1:1280 and we know something else is going on as well. What has been you alls best solution for trying to figure out what needs tested for or when? I’ve sat on this for over 10 years and have been miserable and now losing hair and lots of other symptoms and I’m not even sure what to do currently. I’ve requested a test to see about Hashimotos and I feel like it’s an inconvenience. And it’s been me hanging out over 10 years and not even ever bringing it up. lol. I’m not sure what the norm mostly is for us seeking answers
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The proper specialist is rheumatology if you can get that referral for a consultation.
Check their background training and
collect all of your labs and records to prepare. A list of your symptoms timeline and all your medical history and treatment will be useful.Diagnosis can take
time in autoimmune diseases.
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1 Reaction@dianne2026, Bless you. I would definitely try and get a referral to an Endocrinologist and request a complete Thyroid panel.
Praying for you. Blessings & Prayers....
here were the tests I had done to rule out several things. I suspected I had PMR. These tests led to various other scans and testing. Like seniormed suggested I went to Mayo dept of Rheumatology.
1.. CBC with DIFF
2. ESR
3. CRP, HS-CRP **
4. HBsAG
5. Interferon Gamma, Serum
6. Hep -B
7. Anti-Chromatin Ab, IgC (RDL)
8. CCP Antibodies IgG/IgA
9. 14-3-3 eta Protein
10. Antiphospholipid Antibody APS, APLS
11.RF test
12. ANA - antinuclear antibody
13. Aldolase - With CK, ALT, AST
14. Interleukin 2 and 6
They only one medicare would not pay for was the IL-2. It was expensive so I did not do it.
10 years is long enough! Find a good Rheumatologist & and Endocrinologist which can be hard but that’s the key in getting a good diagnosis with the right tests which leads to the right treatment. I’m 67 & have had Lupus, Hashimotos & diabetes for 30 years. No picnic getting diagnosed back then; took 8 rough years. I was dismissed by many Drs. telling me I was just a busy Mom or just depressed. I learned over the years to advocate for myself, fire Doctors who would not listen & respect me & to learn about my disease. Now there is so much information but going to a reputable source is very important. Mayo Clinic & Cleveland Clinic is a good start.
Do a good search on Rheumatologist and Endocrinologist that are in your area. Read their backgrounds. See what other patients are saying through reviews. Teaching hospitals in my experience have many good specialists. And if you are close to any of the Mayo Clinic Hospitals or specialty clinics I would pursue that. They’re one of the only hospitals that were able to help me this last spring when I got so sick with a new autoimmune disease, GCA. I spent 2 weeks in the hospital at Mayo & they assured me I wasn’t going home until they could figure out what was wrong with me. And they did!
Good luck on your health journey ahead I hope you find answers soon. And remember, don’t let anyone, not a Dr. or even a well meaning family member ever make you feel like you’re an inconvenience. You deserve to be heard!