Re: [SPAM]Re: neurosarcoidosis,

[Guest guest]

cherisse

I found out I had NS about 3 years ago. I had a long road and still am not at the end.

I had the eye thing as a flare up. 3 days of steroids IV and then a week of prednisone orally and then my reg dose. I couldn't see out of my right at all. I guess we were lucky we caught it when we did. Yeah the optical nerve was inflamed. It was really scary. I gained about 40 lbs on the prednisone since I got this monster. I can't seem to shake it. I guess because I sit a lot. Duh I am trying now. Would you believe I got feeling so sorry for my self I went on a chocolate binge. Yep I did. That didn't help the weight gain. Well I am trying now. I actually gave up my much loved chocolate. I hope I don't turn into the witch of the west.

Anyway you hang in there, we all have our ups and downs- good times and bad.

We are all thinking of you with prayers and hugs.

Take care of you.

Jackie from Wi

neurosarcoidosis,Hi there im new to this group, last year march 2007, is when my symptoms started, i had a blind spot in my left eye, which happened at a click of a finger, i went to my doctor how could not see anything wrong, she referred me to an eye specialist who look at my eye and couldn't she anything wrong, he then referred me for an MRI scan, anyway while i was waiting for an appointment, 2 weeks later my health deteriorated in a space of a week, i couldn't do anything and i felt weak, on the Friday i asked my mum to take me to the hospital, at the hospital they gave me a blood test, which showed that the sodium in my blood was low, i told them about my eye and they admitted me. the next day i had an MRI scan which showed that the hypothalamus gland in my brain and the optic nerve was inflammed, they started me on anhigh dose of steroids via iv, the i stared taking the steroids orally, i was in hospital for 3 weeks having loads of test, i had blood test's everyday, MRI scans, pet scan, CT. scan, gallium scan, and had to give urine samples, the neurologist told me the i have a condition called neurosarcoidosis i was very scared as i had never heard of such a condition, Im still on steroids a year later, i see my neurologist every 3 months, Im 22 years old with a 2 year old son, i've put five stone in weight due to the steroids. any body in the same boat as me please email me i would love to hear from you xxxxxx------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Jackie,

The wicked witch of the west is my ring tone on my cell. Explains it all, don't it?? Seriously,

I know how depressing the added bonus of weight gain with the treatment can be, but cut out all chocolate??? That's seems extreme. You can still have just a smidge, just make it the dark chocolate that supposed to be good for you. Every day deserves a taste of chocolate!!! Bonnie B. ( unless you're diabetic, of course)Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food.