Re: Re: Hi. My name is ...

[Guest guest]

Tell your wife, , she has my favorite name! I hope she is doing well. I take 2,500 mg of cellcept every day. It helps to take it divided up into am and pm doses, and I take it with Tums calcium tablets and crackers. Maybe that would help her. I'll keep you b oth in my prayers.

:-)

shanniemel@...

From: shanniemel <shanniemel (AT) yahoo (DOT) com>Subject: Re: Hi. My name is ...To: Neurosarcoidosis@ yahoogroups. comDate: Thursday, October 8, 2009, 8:49 PM

I am on 2,500mg (2.5 Grams) daily of Cellcept. I was on 100mg. of Prednisone daily for about 4 months. Then it took me about 6 months to wean off of it (a horrible experience). I was getting Methotrexate before I had a full-blown episode that wound me up in hospital with PIC line steroids. I have a plethora of drugs, let me tell you! Most of them are to help with the side effects of the medicines I tke to control the NS. I have erosive esopahagitis (sp?) which is ghastly. I have to take nitroglycerin for the spasms.. I have so many meds...I HATE taking pills. What a rotten attitude I have, eh? THank you Marla, for the nice message. :-) Sorr yfor the typos. I have to use a stylus or pencil to type, and it takes me forever! I'm sending you a big mental thankyou hug.BTW, after a year my neurologist says that there is no more nerve improvement. Is that true? Am I stuck like this?shanniemel (AT) yahoo (DOT) com > > >> >> > I was diagnosed with Neurosarcoidosis last year. I have a lesion in my> > spinal cord directly under the brain stem. The inflammation around the> > lesion is under control, but I have been left with a lot of nerve damage and> > pain. I initially spent 4 weeks in hospital, two of them at Mayo Clinic. I> > then went to rehab to re-learn how to walk, use utensils, do basic> > self-care, etc. I am lucky to no longer be in a wheelchair, but I have a lot> > of difficulty walking, using my hands, and so

forth, so I am fairly> > isolated. I have been feeling pretty overwhelmed and down, so my cousin told> > me to try this support group. I'm not sure of the protocol, so excuse me if> > I breach etiquette.> > Anyway, hi everyone.> >> > > >>

[Guest guest]

Right now we are on 500mg in morning and another 500mg at night with a 250mg capsule before bed. She has found that by eating something when she takes it does help. We are eventually suppose to get back up to at least 1000mg twice a day. Matt> > >> >> > I was diagnosed with Neurosarcoidosis last year. I have a lesion in my> > spinal cord directly under the brain stem. The inflammation around the> > lesion is under control, but I have been left with a lot of nerve damage and> > pain. I initially spent 4 weeks in hospital, two of them at Mayo Clinic. I> > then went to rehab to re-learn how to walk, use utensils, do basic> > self-care, etc. I am lucky to no longer be in a wheelchair, but I have a lot> > of difficulty walking, using my hands, and so

forth, so I am fairly> > isolated. I have been feeling pretty overwhelmed and down, so my cousin told> > me to try this support group. I'm not sure of the protocol, so excuse me if> > I breach etiquette.> > Anyway, hi everyone.> >> > > >>