New to the Board - Diagnosed 2 years ago

[Guest guest]

Hi, I have looked for a msg. board for NS for a while and finally gave

up until recently. I was diagnosed with NS 2 years ago and was put on

prednisone (60 mg) and within 2 months doubled my weight (150 to 300

lbs.). As my neurologist lowered the prednisone (too fast) I suffered a

stroke. Two months later I broke my left leg. Six months after than

developed seizures, had a brain biopsy. During all this time, I did

start on chemo (cytoxan - 1800 ml every 3 weeks) and have continued the

prednisone lowering the dose now to 20 mg. My last MRI isn't showing

any improvement (although I feel better) or may even be worse. I'm at

a loss. Has anyone else experienced these types of effects. I just

feel so very isolated and alone in my situation, or do you have a

suggestion as to where I can turn for help. My neurologist hasn't

referred me to anyone except to a " specialist " at s Hopkins but he

suggested a rheumatologist, she doesn't know any that she trusts to

send me to.

[Guest guest]

Hi, I have looked for a msg. board for NS for a while and finally gave

up until recently. I was diagnosed with NS 2 years ago and was put on

prednisone (60 mg) and within 2 months doubled my weight (150 to 300

lbs.). As my neurologist lowered the prednisone (too fast) I suffered a

stroke. Two months later I broke my left leg. Six months after than

developed seizures, had a brain biopsy. During all this time, I did

start on chemo (cytoxan - 1800 ml every 3 weeks) and have continued the

prednisone lowering the dose now to 20 mg. My last MRI isn't showing

any improvement (although I feel better) or may even be worse. I'm at

a loss. Has anyone else experienced these types of effects. I just

feel so very isolated and alone in my situation, or do you have a

suggestion as to where I can turn for help. My neurologist hasn't

referred me to anyone except to a " specialist " at s Hopkins but he

suggested a rheumatologist, she doesn't know any that she trusts to

send me to.