HI, Im new here…
AnonymousJuly 16, 2007 at 8:48 pm
My name is Jason and In late March 07 I came down with the numb feet and hands along with pins and needles. within 7 days I could barely walk and my face went paralyzed. Within a week I was diagnosed with gbs and was treated with Ivig…it slowed down the progression but did not stop it. I was sent home again and within 2 weeks I was on Ivig again. Finally, over the last several weeks I have started PP and it definately is doing wonders. I can walk again (barely) and my face is working at 90%. By the way the doctors have changed my diagnosis to CIDP….
Question 1: I feel like I was diagnosed quickly and was getting some sort of treatment since week 2 of coming down with symptoms, why is it that I would have so much axonal damage that my nero sais may be permanent…
Question 2: I am in the hospital right now 7-15-07 getting PP and the doctors are asking me what meds do I want to try–Cellcept or Cyclosprin..
Can anyone give me some advice on their experience with these meds……
This is so frustrating. I am lucky, on a good day to walk more than 20 ft. I have never got back all my feeling or strength in my arms, legs, hands, and feet. My head feels like I got bugs crawling around in it….
My wife is awsome and I could not do this without her.
I have 3 children 5yr, 3yr, 1yr…it kills me everyday that I do not have the steangth to hold them anymore. I could not do this without them either.
Thanks to whoever reads this………
AnonymousJuly 16, 2007 at 10:15 pm
I Know How You Feel; I Think Your Neuro Is Using The Right Diag; Because I Had Gbs And In The Morning My Leg And Hand Were Out And The Same Day In The Night My Other Leg Was Out Too. Don’t Give Up God Can Make The Diference Just Keepon Going And Keep Your Faith Highest As You Can.
AnonymousJuly 16, 2007 at 10:23 pm
Welcome to our plight. I, too, have CIDP, but was not confirmed until it had
me lifting my right foot when I walked. It’s been 10 years now that I have
this disease. You sound like you did start off with GBS, then, it went into
CIDP…it does happen.
However, your question about Cellcept…I was on it for three months at 2000
mg per day…every two weeks, I landed back in the hospital. I was also
taking prednisone. I cannot tell you what is best for you…some people have
good reactions to the medicine, others don’t. It really is something that you
need to try and if it doesn’t help or you have alot of side effects, then get
off of it. Cellcept was originally used and still is, for an anti-organ rejection
medicine….however, they found out that it has a good immunosuppressant
reaction…without being a corticosteroid, like prednisone.
This disease has many variants in different people, you’ll notice on the boards
that some people will be similar, while others, far different. You need to be
able to trust your neurologist and take it from there…
Good luck to you….how do you like the nice hot summer we are having?
AnonymousJuly 16, 2007 at 10:39 pm
Definately a hot summer…to bad I cant get out there and enjoy it right now, its tough to handle the heat without my nerves going crazy….
wow 10 years…I can barely handle the last few weeks…I keep pushing myself to try to get back to work to take care of my family but just cant get my thoughts straight on top of all the weakness and numbness with pain..doesnt that sound weird? (numbness with pain)…This is some crazy stuff…
AnonymousJuly 16, 2007 at 10:47 pm
Welcome. I dont have CIDP, had GBS 22 years ago and suffer post GBS residuals. However, I do read what many CIDP’ers write, and I know that Cellcept comes up many times. If you click on the Search button in the blue bar and type in Cellcept, you will probably get many pages of threads that contain the word Cellcept, but by reading some of them, you may have a better answer to your question.
One thing I do have to say is that your doctors seem to be willing to work with you to help you, sometimes they arent so willing or caring. Wishing you all the best!
July 17, 2007 at 7:36 am
Welcome Jason. I’ve just hit my 5 year mark for the CIDP, for the last two I’ve been on Cellcept **1000mg twice a day} and currently doing the IVIg every 5 weeks. While I seem to be tolerating both pretty well, Maimi Girl is right each case is different. It took alot of trail and error to get where I am today, while I’m not running races I’m doing okay.Sometimes I felt like a lab rat,lol, but in the long run it’s what it takes to find a combo of treatments that work.
The people here are great, for questions, moral support or just when you want to let loose with a good “I’ve had enough!”. Again welcome!
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