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Old 04-19-2008, 05:48 PM
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barb02 barb02 is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Illinois
Posts: 3,836
15 yr Member
barb02 barb02 is offline
Grand Magnate
barb02's Avatar
 
Join Date: Jan 2008
Location: Illinois
Posts: 3,836
15 yr Member
Default Appt with ms specialists/any experience with cellcept?

I had my appointment yesterday with 2 ms specialists and they decided after my exam and going over records, etc. that they were going to recommend to my neuro that I try one of the transplant anti rejection drugs. They also suppress your immune system. The one that they mentioned is similar to cellcept and used widely in Europe for ms, but is less expensive. Unfortunately, I forgot to get the name of it so I will have to wait until I see or hear from my neuro.

They also suggested that I try provigil (gave me some free samples). I also want to talk to my neuro before I try it.

They seemed to imply that tysabri was a rather agressive (their words) therapy for me, and stated they would not recommend re trying any of the other dmd's due to my reactions.

Their other suggestion is that I could try to get into one of the trials for one of the oral meds that are being examined, but I would have to travel to St. Louis (140 miles each way). There are 3 trials that are currently accepting applications for patients right now in the area. I am not sure I want to go that route.

I am not going to make any decisions right away.

They also stated that despite my residual problems that they felt my ms was mild, and that I had probably had it for years despite experiencing my first major flare last March. They based this conclusion on my number of lesions (6-brain; 1-spinal), one flare, and the fact that I performed quite well on the neurological exam. I was a little confused by this assessment, but it sounded good at the time.

So why do I have to use a cane to walk due to muscle spasticity and experienced a constant hug in my left rib cage in back?

They seemed more conservative in their approach, and also stated that they thought there would be oral meds for ms in 1 to 2 years so I just need something to help me until then.
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