Re: alone

[Guest guest]

Try not to let it get you down. We've ALL been there in one way or another. I had a middle Eastern doctor tell me I was suffering from a migraine, because it wasn't a stroke. Is this common doctoring logic????? What the !#$^^$#!!! Then another doctor told me it was all imagined; the symptoms must be psychosomatic! It wasn't until a doc at the THIRD hospital I went to found the mass in my spinal cord directly under my brain stem that anyone believed me (except my folks and my primary care doc--G-d BLESS them!!) ....and by then I had incurred irreparable nerve damage throughout my body. The lesion had cut off my spinal fluid. Here's the ironic part: I ended up having 2 strokes because of it! I had to spend a month in a rehab hospital learning how to eat, move my fingers, wash, go to the bathroom, walk.....GEEZ!So, I guess what I'm trying to say is that

you just have to keep looking for bright spots....like this group. It is the first time I haven't felt totally alone and helpless...! People are always asking me what is wrong with me. When I reply NS, and try to explain what it is, they say they've never heard of it, and look at me as if I were lying. My own sister in law rolled her eyes at me when I was having a particularly bad pain day, and said "It's called aging, , and we're ALL going through it. Get over it." Well, sorry, but NO, she's NOT going through the agony that is NS. Just because people can't see big bloody masses and bones sticking out, they figure you should just grit your teeth and bare it. Well, it ain't that simple, as you know. YOU have to take care of you and just remember:Subject: aloneTo: Neurosarcoidosis Date: Tuesday, November 24, 2009, 5:06 AM

It has been a long road for me. When I was young I was diagnosed with many different but Wong mental D/o I spent a lot of time in the hospitals for them. I know when I was a kid the doctors were guessing. As I got older the symptoms grew but were unexplained. Doctors were then leaning to the suto side of things then I stared with the seizures. It took an intense year of seizures and the very large brain lesions to finally come up with Neurosarcoidosis. The time that has passed I feel has hampered my life I feel different even different from the rest of those who suffer from this I was told I was apart of the 5% that get sarcoid apart of the 1% that get the neurosarcoidosis and .1% that only get neurosarcoid. I feel alone because of this no one can relate I'm in remission now but I know it will strike again worse than before it is how the history of time has always been. I just need to share this it has been wrapped up in me haunting me

angering me, thanks for listening.