Re: [SPAM] New to the Board - Diagnosed 2 years ago

[Guest guest]

My Neurologist sent me to a rheumatologist also. He handles the Methotrexate and prednisone for me. All seems to be working out pretty well so far.

I trust that he is caring enough if he doesn't understand something he finds out.

Sorry you have to go through all of this but you are in good hands here. If the mediators don't know the answers they will try hard to find out

Jackie

[sPAM] New to the Board - Diagnosed 2 years ago

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]

My Neurologist sent me to a rheumatologist also. He handles the Methotrexate and prednisone for me. All seems to be working out pretty well so far.

I trust that he is caring enough if he doesn't understand something he finds out.

Sorry you have to go through all of this but you are in good hands here. If the mediators don't know the answers they will try hard to find out

Jackie

[sPAM] New to the Board - Diagnosed 2 years ago

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.