Better days

[Guest guest]

This support group is wonderful. For 13 years I have been alone living with

Neuro-sarcoidosis in fear that it will flare up again. I have been fine for the

past I'd say, 9-10 years with no official signs that the neurosarcoidosis has

resurfaced. I live in Montgomery, AL and all of my doctors are in Birmingham,

AL. On May 26 1996 at the age of 12, I woke up completely deaf in both ears.

After being seen my over 15 " specialist " I was finally given a biopsy after more

than 5 spinal taps, 15 MRIs/CTs, blood test etc...a on duty x-ray physician

noticed a small inflamed area near my right ear. It was the size of a " pin tip "

so it's a miracle he saw it. The biopsy was done and after a year of testing, I

was diagnosed with Neuro sarcoidosis. Initially doctors were convinced I had

meningitis since I'd woken up deaf and was having facial paralysis and muscle

weakness. All test came back clean of meningitis yet they continued to test for

it (horrible experience). Anyway, at the time I was the youngest patient my

doctors had ever heard (that was still living) that was diagnosed with

neurosarcoidosis and they put me on the highest adult dose of Prednisone,

Methotrexate, Folic Acid, Zinc, and other medications b/c they did not know how

to treat this in children. I went from a tiny 98lbs (I'm only 4'11 " ) to a

staggering 140something pounds in a matter of WEEKs not months. I could barely

walk and could not stand for more than 10 minutes or my legs would literally

give out. The Prednisone made me blow up so quickly that I FELT every painful

stretch mark. I would reach for something and feel my skin split. It was a

horrible experience I never want to experience again.

I am still deaf and have since learned sign language but also got a cochlear

implant a year later which I can hear extremely well with.

So far I've been doing very will and no signs of the sarcoid, however, there are

some things that bother me so much that I don't know what to do. I have muscle

twitching EVERYwhere at any given time. I mean they are so strong and can last

for so long. They can also be painful-sharp pain like a stabbing as well at

times. I don't know nor do doctors if this is related to the neurosarcoidosis.

Does anyone else experience this?? I also feel what I call " heart flutters " like

there's a butterfly in my heart from time to time. Cardiologist have been unable

to catch this episode as well.

Am I alone or does anyone else experience " heart flutters " , muscle twitching

(that can be painful at times), and sharp stabbing/needle stick sudden quick

pains throughout the body?