Re: Back to new member e

[Guest guest]

Welcome e to the group. I'm sure you will find a lot of info here and a lot of support.

Check out the links and archives too.

Hugs,

Debbie T.

Co-moderator

Subject: new member intro : hope i joined the right groupTo: Neurosarcoidosis Date: Sunday, July 27, 2008, 6:35 PM

hi everyone. happy Sunday evening where ever you are. i tired writing this earlier but my internet connection got cut off somehow. drats!

My name is e I'm 43 and from Toledo,Ohio. I was diagonosed with Sarcoidosis last year by a doctor at Cleveland Clinic in Cleveland, Ohio. I also have had an internal bleeding disease known as ITP since 1998 which took away my immune system. Up until this year i had been antibody infusions but I started having side affects from them and I started bruising during one and was hospitalized the next day. My hematologist in Cleveland when i went to see him checked my Sarcoidosis and I was very elevated in the numbers. I was 80. so they took me off the infusions. In August I go to Ann Arbor, Michigan to see a Sarcoidosis specialist. I'm not on any medication so far for it and haven't been for almost a year. I've been experiencing high degrees of pain. Last week I two days where I couldn't walk on my right leg. I also have fibromyalgia along with other myalgias. I have begun to get the dry cough from

Sarcoidosis quite a bit. My white count was rather high last week at 13.9 and I have been brusing ever since I've been off my infusions. My doctor put me on iron but it doesn't seem to be helping. He told me if my counts don't start to change through the iron we are looking at another issue.

I thought fighting ITP was hard but this is harder. When I was in the hospital a few months ago a nuerologist came into see me because of the headaches i had been having to often. He asked me if anyone had talked to about Neurosarcoidosis and i said not at the present time. So i have alot of health issues at once. the problem is ITP is antiinflammatory and Sarcoidosis is inflammatory. I have no immune system and I'm allergice to prednisone. I 'm hoping after next month they will put on Remacade. I have heard good things about it .

Well didn't mean to write a book for my first intro . LOL I hope to get to know some of you and you will accept me in the group. I really need the support and i hope i have joined the right group. i had belonged to another one last year but i was at a difficult emotional level of what was happening to me. so now i truly need the support.

bless you all

martine

ps i have been disabled since 2001