Microscopic polyangiitis - Any help would be greatly appreciated

Posted by soccer1477 @soccer1477, May 30 6:30am

I have been dealing with a mystery health issue for now 2 years, it all started after working out, my pectoral muscles cramped up on me two weeks later the fasciculations started all over my body, then horrible mid back pain, under my arms and pecs, then a month later horrible pain on my hamstrings and legs.
After 8 MRIs, 4 EMGs, and Tone of blood work, 3 Neurologist, 6 Ortho surgeons, 1 Neuro surgeon, 3 rheumatologists, also including diagnoses such as Bening Fasciculation Syndrome, Cramp Fasiculaiation Syndrome, Probability of Stiff PErson Syndrome, probability of ALS, I had my new rheumatologist and he ran about 50 blood test to which the followings came up positive and pointed to the diagnosis of Microscopic polyangiitis. ANA SCREEN, IFA POS, ANATITER 1.40, ANCA SCREEN POS, and ATYPICAL P ANCAT TITER 1.320
Got prescribed Azathioprine but am still in a lot of pain, now on my pectoral muscles
I started taking steroid 4 mg on my own because my pain management provided it and it has helped some
I wanted a 2nd opinion and the Dr. instead of taking my case is told me to go to Mayo that scared me a lot more.
I'm the only breadwinner at home and I'm not liking what is going on and don't see the light at the end of the tunnel, not sure what to do, as all these test and treatments are very expensive and don't want to give up, even though some times, is just rough to come out of bed.

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@cantek it would be Jacksonville, but after calling they are saying is a Neuro or Spine issue and that i need to schedule through them, I have called them again, so trying to figure everything out. THANK YOU so much

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Neuroimmunology is probably your best bet. Call that department and ask. They are so helpful on the phone!


Avacopan is now used instead of prednisone. Doesnt have those nasty prednisone side effects.
If mayo is too far try a good teaching hospital.

Best of luck to you. It gets easier!

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pls tell me about Avacopan. All of my drs are still prescribing steroids


pls tell me about Avacopan. All of my drs are still prescribing steroids

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It was cleared by the FDA and usage began to be prescribed.
It replaces prednisone and has fewer side affects .
You can just use google to get accurate info.
Best of luck!

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