Re: Use of Provigil for fatigue

[Guest guest]

Fred,

I have been reading all the posts for the last couple months, but this is the

first time I've written. I've been taking Provigil for about a year and a half.

It was prescribed to me by a doctor who is a sleep disorder specialist because

of problems I've had with daytime sleepiness. It does help tremendously with my

energy level and keeps me more alert during the day. I have no problem going to

sleep at night, either. However, because I also have restless leg syndrome

(which I expect is caused by the CMT), I take .5 mg. of clonazepam every

evening. This drug does have a sedating effect and most definitely helps me

have a good night's rest. I resisted taking any drugs for the longest time, but

I've finally come to realize that my quality of life is more important than

being able to say that I don't take any prescriptions. My neurologist at the

University of Colorado, Dr. Hans Neville, has not prescribed any medications for

me, but does agree with my sleep specialist's treatment.

I'm 48 and was diagnosed at age 28 with CMT. One year ago I had the Athena DNA

testing, however, it proved negative for known CMT genes. Two months ago, Dr.

, with the University of Colorado Adult Clinical Genetics

Department, tested me specifically for the CMT 2 genes that are known. In just

ten month's time, several more genes have been identified from the time I

initially was tested by Athena Labs. I am amazed at the progress that doctors

and scientists are making in their discoveries of the variant genes and forms of

CMT. I'm still awaiting the results from Athena. My neurologist strongly

believes I have CMT 2; actually I hope this test proves it out because then I

can have my children tested. I think the knowledge is important and may save

them the years of frustration, EMG's, etc. that most of us go through until we

have a definitive diagnosis. It's helpful, too, for my children to consider

their probability of having CMT when they decide to start a family.

Well, that's a lot more information than you asked for, but I've been wanting to

introduce myself anyway. I hope you have the positive experience with Provigil

that I have had. I take 200 mg. every morning.

Warm regards,

Diane Covington

[Guest guest]

Diane,

Thanks for the response. My neurologists prescribed 200 mg for the first week,

then increasing to 400 mg. The first day I took it I didn't get sleepy until

4:00 AM the next day. But last night I slept better. I too have been diagnosed

with Type 2 and I am still waiting for a positive DNA test.

Fred

[Guest guest]

Hey guys,

I swear by Provigil. I take a small dose now and I see my Muscular Dystrophy

doctor tomorrow so I am gonna ask her to bump it up for me. I love my job and

don't want to lose it.

Laurie in Sarasota

Please give us your thoughts on what you'd like at the next major CMT

Conference. /polls

[Guest guest]

I need to weigh in on the Provigil issue.

My doctor started me on Provigil about 3 months ago. I have seen a

marked increase in productivity that did not occur with other

stimulants.

My use of Provigil has eliminated my need for caffiene and my blood

pressure has returned to a healthy level. My rest/wake cycles have

both improved.

However, I believe that Provigil might be addictive (at least

mentally). Provigil has all the potential drawbacks and dangers

that all new medicines carry.

If you suffer from excessive daytime sleepiness, talk to your

Doctor, but also be very wary. People once believed Vioxx to be a

miracle.

Mike