Re: thank you tracie

[Guest guest]

thank you for the info on the cellcept. You are so knowleadgeable on this. Yeah dr Albanio she is around my age maybe a few years older.. so mid-late 40tys and when you find a dr who takes your concerns seriously it is wonderful, Not that my Neuro did not, but he said he is chief of Neuro not of Rheumy and this would be her dept. and neither one of them have an Ego problems with steping on each others toe's..lol or changing meds around. They work together so well. One thing she did tell me is I could be having seizures, she said you don't have to have a grandmal to be seizures,she said some just sit and stare duing one. so she agreed that dr ross pulled my licence until they get me more stablelized.

It is just all setting in and after breaking the news to sheriff last nite when he got home from work.. he is just blown away, and I can tell he is very worried about me. My aunt took me to my appt because sheriff couldn't get off work.

what worries me at this point.. i feel like i hit bottom and so worried of an infection with the mrsa i've had 5 times in the past two years. and i am having panic attacks thinking i get sick and die. I am glad you explained the way cellcept works and what it exactly works on... because the medical terms even thou my medical experence I did not understand.

Thank you again.. you are such a blessing Tracie.

and hope this finds you feeling as good as you can and you rest also..

Many Blessings A.

,

This is wonderful news. It sounds like you're finally in the hands of someone that will treat your sarcoidosis with the seriousness you deserve.

Cellcept is like the Enbrel or Humira or Remicade. It is a BRM-- Biological Response Modifier, and helps to stop the production of TNF-B-- the one we produce too much of. It is more specific in that it only stops the production of this, instead of blowing out the whole immune system-- so it's a better choice.

I was surprised that they hadn't had you stop the Imuran when you hit such a low WBC--

so, this week, visualize your white cell count coming back up, and know that you are on the right track.

Take care,

Tracie

NS Co-owner/moderator

Subject: well more bad news todays from rhuemyTo: neurosarcoidosis Date: Tuesday, April 7, 2009, 3:28 PM

I had a wonderful visit with the rheumy but not so good news .. my wbc is ever lower than 1.0 since 1 and half weeks ago.

she stoped the Imuran right away and is starting to wean the steriods already. she gave me a script for Cellcept. She said she wants a wash of the Imuran for one week than start the Cellcept. She said wear the mask when i go out .. she said if i start to feel sick to call asap. and i will have to go on iv antibodics.

She said the progression of the NS is no longer stable with the Imuran so she said now onto more powerful drugs. As i heard with cellcept is very risky.

but agreed to the drug.

i have to have xrays of my arms and hands and feet and legs. she is very smart when it comes to NS. she has been treating it for 4 years in this office with my neuro. so made me feel so comfortable and took all my concerns to heart and said when NS progresses to the point you get it in your muscles it can be rough hard road upward. she said so many of her NS patients complain of the arm and leg pain and weakness at this point. she is also concerned about kidney problmes . she is running some kind of blood test that has to do with the mucles. i had the blood work done there so she said she will call me with all the results soon as they come in.

other than my Neuro i'v not seen a dr who new so much about NS.

I will keep intouch with all the results as they come in and when i start the cellcept. and if anyone out there who had cellcept please give me some input. or if you tracie know about cellcept.

I hope this letter finds everyone a pain free day and love to you all

Many Blessings A.

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[Guest guest]

(((((((((((((((((((((((((( hug )))))))))))))))))))))))))))))

Tracie

From: jessicabouhamama <JessicAbouhamama@ aol.com>Subject: well more bad news todays from rhuemyTo: neurosarcoidosis@ yahoogroups. comDate: Tuesday, April 7, 2009, 3:28 PM

I had a wonderful visit with the rheumy but not so good news .. my wbc is ever lower than 1.0 since 1 and half weeks ago.

she stoped the Imuran right away and is starting to wean the steriods already. she gave me a script for Cellcept. She said she wants a wash of the Imuran for one week than start the Cellcept. She said wear the mask when i go out .. she said if i start to feel sick to call asap. and i will have to go on iv antibodics.

She said the progression of the NS is no longer stable with the Imuran so she said now onto more powerful drugs. As i heard with cellcept is very risky.

but agreed to the drug.

i have to have xrays of my arms and hands and feet and legs. she is very smart when it comes to NS. she has been treating it for 4 years in this office with my neuro. so made me feel so comfortable and took all my concerns to heart and said when NS progresses to the point you get it in your muscles it can be rough hard road upward. she said so many of her NS patients complain of the arm and leg pain and weakness at this point. she is also concerned about kidney problmes . she is running some kind of blood test that has to do with the mucles. i had the blood work done there so she said she will call me with all the results soon as they come in.

other than my Neuro i'v not seen a dr who new so much about NS.

I will keep intouch with all the results as they come in and when i start the cellcept. and if anyone out there who had cellcept please give me some input. or if you tracie know about cellcept.

I hope this letter finds everyone a pain free day and love to you all

Many Blessings A.

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