Re: new Barb from

[Guest guest]

dear Barb,

I would like to welcome you to the group. You came to the right place, we are very supportive to each other. Even though we all have our rough days we try to get online and help each other through this, since we each know what everyone is going through.

I know the massive steriods are like, I was on them daily for 5 years until I became toxic. And then I found a wonderful chief of Neuro at a teaching hospital in my state... Hershey Medical center in PA. And he put me in patient and got me off the roids and put me on Imuran and plaquenil. I was dxd with NS in fall of 2001, before that a rheumy at the time told me I had lymphoma from the spinal taps I had done.

When I found Dr Ross At Hershey he had a second opinion on the 3 spinal taps and with their rheumy dr there said there was no doubt I had NS.

And a lung function test that showed a good case for NS. so they said that was what they needed to confirm in their minds. I also had a liver biopsy confirming sarcoid also. and autoimmune hepititis.

I have been on Imuran and plaquenil since fall of 2001. within 3 months of being on the Imuran my white blood count went back down to normal well down to 3.1 from 1600 it was that high for 4 years and that was ignored.

I just got out of the hospital from a 5 day stay for iv steriods and hard narcodics to help a flare I developed. than I was on iv at home for a few days . I am in college I have a 18 yr old son and a stepson 5. and my husband and our little fur ball Mandour (Bengal kitty). They are all very supportive.

At 41 and returning to college has really taken a toll on me, and landed me in a flare. so my Neuro said I had to cut back or drop out all together. so last semester I had to drop two classes and just keep one, and end up with a B as a final grade. In oct, I was on the deans list with gpa of 4.0 and I was so proud than the bomb dropped and really left me feeling like school was a no no. But for spring semester I am registerd for 2 classes. I see my neuro the 24th christmas eve and see if he agrees with the two classes.

Well enough about myself, Welcome again and you will feel very welcomed and loved here !!!

Many Blessings and hugs and a pain free day

in PA

hello everyone, my name is barb i am 38 and am new to this disease. i was just diagnosed in august 08 after battling with iritis and arthris which then found completly on a fluke was sarcoidosis inthe lung. by the time this was found it was in my spine and brain. i am a women of great faith in god so i know i will get through this as will all of you. i was on massive doses of prednisone which i am sure you all familar with ,with not much sucess in the whole spine and walking thing. after trying imuran and unable to keep it down my doctors are sending me to cleveland clinic.everyone says to stay positive but it possitivly sucks!! any advice on how to use this sup;port group would be great. i took some time to view pics and read others emails that were sent . i would love to become a part of this family because i need all the support that i can get.hope to hear from someone soon. barb

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