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

[Guest guest]

Hi !

Welcome to the group! You certainly have found the right place! I haven't been around for a few days but have been here for a few years. I have neurosarc only and have been told I would at least be on maintenance for the rest of my life but everyone is different and so are our treatments. I am also hard headed and I'll fight to prove them wrong! I've been on prednisone for about 5 years? and I get Cytoxin IV treatments every 4 weeks or so (for over 4 years) but have been told they're not working so I'm hoping to get on Remicade or some other drug if I can't get a discount from the drug company. Others are on Remicade or have been in the past but everyone is different again. If only there was one magic pill! LOL

in KYJoin our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

To: Neurosarcoidosis Sent: Thu, October 8, 2009 8:49:54 PMSubject: Re: Hi. My name is ...

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.> >> > > >>