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« on: May 10, 2019, 09:58:41 AM »
I have posted on these subjects a few times, but have new information to report.
I have a very complicated history, and even elite Rheumatologists have trouble unraveling it.

Briefly, I was ill with the sudden onset of Polyneuritis in 1992. There was confusion about my condition for 10 years, even with academic experts.
Included in these experts is a premier research Rheumatologist, located in La Jolla, CA.

In 1998, I became very ill with fever, leg pain, confusion and abnormal Lab Tests: Creatinine phosphokinase (CK) of >3000, ESR >30 & a Monocytosis. Multiple MD's could not diagnose this, including 3 academic Neurologists and Rheumatologists. My confusion led to difficulties at work (due to Sjögren's Fog), & I was fired at age 57 years. I started a long research plan, with my GP's help. My conclusion was Sjögren's Syndrome & my MD agreed. This was 10 years after the problems started.

I attended with many Rheumatologists, none of whom could or wanted to treat me. Finally in 2012 I attended a superlative lady Rheumatologist at a large, elite California Medical Center. Most of my tests were negative, except a high Creatinine phosphokinase (CK). Suddenly, I became super sick and all my tests became positive! I was given a session of IVIG, with improvement. I also did trials of Imuran, Methotrexate, Corticosteroids and Cellcept. The latter caused multiple infections, & I stopped using them.

Late last year, an academic Neurologist said that I could have Inclusion Body Myositis, instead of Sjögren's Neuropathy. After multiple consultations and four new MD's, it was now 2019. In my opinion, I did not have IBM (by this time, I was an expert). No new treatments were offered to me, and my access to IVIG was curtailed. I now had confusion & multiple opinions by my caregivers.

I intend to seek help at two elite institutions on the East Coast (Mayo Clinic & Johns Hopkins). I regard my care in California as sub-optimal at the least.

So my message is:
- Your MD's can't always help
- If you are a complex case, seek out a large academic center
- If you have Neuro-Sjogrens, you may also acquire Inclusion Body Myositis
- Do your own research. There can be surprises at every turn
- Advanced Care should include IVIG and an Immuno-suppressant drug

Best wishes to everybody.
« Last Edit: May 14, 2019, 09:45:43 AM by vrystaat »
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage