Welcome to the Neurosarcoid group, krumdawg

[Guest guest]

I would like to say welcome and there is not such thing as a stupid question. Sorry we have to meet under this conditions but you have come to one big happy family!! we are there for each other weather to cry, laugh, or just catch up on family life.

Most of the time its because we are in such pain and just need someone who understands what we have to listen. We all have the same basic complaints that family and friends just don't seem to get it. for the most part we look fine, but inside we are falling apart. and in terriable pain.

I am married to a wonderful man and have two children one 19 yr old son and 5 year old from my husbands previous marriage. OH yeah and a wonderful cat named Mandour he is a Bengal cat..I am 41 and was dxd spring of 2001 but I was very ill for about 10 years prior and no one in my state could tell me what was wrong. I was told I had Lymphoma,I got that call at 4pm in the afternoon after a spinal tap and had to wait till the next day to get in with the dr...I thought my life was over. I was told by every Neuro dr in the state if I had seizures they could help me but they can't. My x-family dr told me I had migrains and had to just stop being a baby and grow up !!.. so they had me on high doses of steriods for 5 yrs daily until I became toxic and had to be put in the hospital to get off them asap.

When I found my Neuro-dr that I have now he did 3 spinal taps, mri's angi-gram, liver biopsy, every kind of test invastive and non-invasive until he got me dxd he said he knew I was very sick and he didn't stop until he dxd it. He is a wonderful Dr. Chief of Neuro at Hershey Medical centre in PA. He is the only one around that knows how to treat this. my wbc was 1600 for 4 yrs and no one did anything, so my own body was attacking my liver, spleen,brain,spinal cord, L-adrenal gland and my lungs, I have lessons in all of them. after 3 months of being on Imuran and plaquneil my wbc went back down to normal. well it is 3.1 now which is low but normal for me now. I have permenent short term memory loss, so i've been going through cognitive theraphy to teach my brain to store it in long term memory. and it has worked wonders.

I have returned to college and studing to be a pathologist i take it one semester at a time, and yes its hard and i am sick often but I hold a 4.0 gpa and just won an award in oct for making the Deans list.

well enough about me,, tell me alittle about you and your family

many hugs and blessings and a pain free day

In Pa