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.
Thanks

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seniormed | @seniormed | May 30 7:42am

You have persisted through a great deal of difficulty to arrive at a diagnosis for a rare autoimmune disease.
Your doctor may not have much experience in treating
your condition and is concerned that you get the best
care and wants that third opinion at a multi specialty
tertiary care clinic. Your vasculitis does require management by doctors with special expertise. Your
rheumatologist offered an appropriate medication but you need other options to manage the symptoms.
Collect all of your records and ask them to advocate for
you to get an appointment. You may qualify for financial
assistance in obtaining biologic meds. Getting connected with this support group is a good start.

John, Volunteer Mentor | @johnbishop | May 30 7:55am

@soccer1477, I'm sorry you haven't found any answers yet. The unknown can be a little scary and I think it's wise to seek a second opinion. It might be a good thing that the doctor recommended going to Mayo Clinic. There is another related discussion that you might want to read.

-- Anyone Living with MPA (Microscopic Polyangiitis) Vasculitis?: https://connect.mayoclinic.org/discussion/anyone-living-with-mpa-microscopic-polyangiitis-vasculitis/

The Vasculitis Foundation also has some information on diagnosis, treatment, living with MPA and more that might be helpful - https://www.vasculitisfoundation.org/education/vasculitis-types/microscopic-polyangiitis/

If you would like get a second opinion from Mayo Clinic, you can find the contact information for
the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

soccer1477 | @soccer1477 | May 30 9:02am

In reply to @seniormed "You have persisted through a great deal of difficulty to arrive at a diagnosis for a..." + (show)

@seniormed THANK YOU so much

soccer1477 | @soccer1477 | May 30 9:03am

In reply to @johnbishop "@soccer1477, I'm sorry you haven't found any answers yet. The unknown can be a little scary..." + (show)

@johnbishop THANK you Sir.

cantek | @cantek | May 31 7:25am

Why scared of Mayo?
It is your best bet at an accurate diagnosis with the latest in top notch treatment!
Run to Mayo

soccer1477 | @soccer1477 | Jun 3 5:14am

In reply to @cantek "Why scared of Mayo? It is your best bet at an accurate diagnosis with the latest..." + (show)

@cantek sorry not scared of Mayo, scared to the fact that they didn't even want to take a look and sent me to Mayo. Mayo is a long way for me but I'm trying to schedule an appointment. Thanks,

cantek | @cantek | Jun 3 2:43pm

You will get amazing care at Mayo!
Which campus will you go to?

siosal | @siosal | Jun 4 7:01am

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!

soccer1477 | @soccer1477 | Jun 5 4:51am

In reply to @cantek "You will get amazing care at Mayo! Which campus will you go to?" + (show)

@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

soccer1477 | @soccer1477 | Jun 5 4:51am

In reply to @siosal "Avacopan is now used instead of prednisone. Doesnt have those nasty prednisone side effects. If mayo..." + (show)

@siosal, THANK YOU so much

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