Final Diagnosis - 9 months later!

Well heck! I was up at OHSU myositis center to check in with the doctor up there last Wednesday - a very smart, very capable 35 year old woman who is scary she knows so much. She studied under the main myositis doc at John Hopkins, and she called that doctor before my appointment with her. She is very pleased with my functional progress...expected me to be using a walker still. She had a final diagnosis for me..based on the quick tanking of my body from the time I noticed symptoms to being bed-bound (2 months), the fact it took three immune suppressing drugs to get better (Prednisone, MTX and Azathioprine), and the muscle biopsy. The diagnosis is now confidently "Necrotizing Autoimmune Myopothy" or "NAM". There is a new study coming up in the next 6 months that I am going to apply to participate in for NAM sufferers. Because NAM was only developed 2 years ago as a myopothy separate from Polymyositis, Researchers want to do a long term study on people who have NAM - what works, what doesn't, amount of flares, life expectancy, additional issues that come up, cancer concerns, statin issues, whatever. Can't wait because the drugs are free if I have another flare.
There is a 40/60 chance that I can get off drugs altogether - less successful than plain polymyositis - but no one is really sure. The OHSU doc also said to stop chasing the CPK levels. they might always be high especially with NAM - but the Rheumy disagreed. I saw the Rheumy yesterday - and I am tired a bit of the bad blood between Rheumys and Neuros. I asked about that issue at the OHSU appointment since the Doc up there is a Neuro. "Oh yes," She said - "The feuds go way back". Really?? Is this what is coordinated care means? This does not improve patient care or good will, or the ability of the patient to compare advice and try to put together a decent treatment plan with this in-fighting. I have to hand carry all of my reports, when I can even get them, because of the "competing"agencies.
Still, I got my monthly blood work back and am thrilled to say everything is normal except for CPK's which are now at 600. Except for blood sugar which I hope will rectify itself as I get off Prednisone. Now I am back on the 5 in one Medifast plan, high protein, eat every 2 hours, to drop the 20 pounds I gained in the last 2 months. And I have a trainer I am working with to get more of my glutes and hamstrings back.
This has been a very strange disease. I found out who my friends were, found out my brothers, sister and Dad all felt like it was a "psychological issue", and if I would just eat better, sleep better, work less, workout more, - well you get the picture. In my family, if you get a serious illness, it is because you somehow deserve it by "bad living". I tried to limit my contact with them - easy because once they found out I was sick most stopped calling or visiting, except Dad who stopped by to lecture me on the "bad living" part. Never really figured it out since I have always worked out and been very active volunteering in my community and busy in my work that I love, and have been a careful eater as I gain weight really easily.
So all in all things are looking up. I am very optimistic that I can manage this disease and move forward, but as we all know we have to "be prepared".
 
Onward!!