Provigil

[Sandpuff]

I went to my pcp yesterday, had one of my very violent myoclonic jerks while she had me on the exam table and I nearly gave her a heart attack.  But, she began to realize that some weird stuff was going on with me and called a neurologist and had me go see him an hour later.

He was a little disappointing in that he was more interested in talking about horses (I board horses) than talking about my symptoms.  I had one of the jerks while in there, they seem to only occur when I'm sitting on the exam table.  He asked if they disrupted my life and I said not really because they only happen when I'm laying down usually, and only if I'm really worn out or stressed.

Anyhow, I told him my biggest problem was fatigue.  It's been an issue with me for more than 10 years, but the last 2 months I was really bad and just being awake for more than 5 hours wore me out.  He prescribed Provigil and I've read some of the threads on it and it sounds very promising.  My question is, is it something you can take daily indefinitely?  Or are you supposed to just take it when you need it (which would be daily for me!)  I hope my insurance will cover it because I'm not diagnosed with ms or anything.  

The neurologist didn't feel it was necessary to do any testing at this time, he said my exam was normal so nothing would show up on an EMG.  What bothered me a little is that in his exam he only did like 3 things.  He had me walk heel to toe, he poked my foot with a pin, and he tested my reflexes.  It took less than 3 minutes.  I thought there was a lot of other stuff they do.  Oh well, if provigil helps, something good came out of seeing him!

[Deb61]

You need to get yourself to a different neurologist.  It sounds to me like that this neurologist has done absolutely nothing to get to the bottom of what's causing the odd sensations, fatigue, and myoclonus jerks.  

It may be hard to get the Provigil without any type of diagnosis, but it really depends on your insurance company.  I was diagnosed with a demyelinating disease prior to the MS diagnosis, and it was difficult getting the Provigil.  Even now, it's difficult getting the refills, with an MS diagnosis.  

You need a more current MRI, because with neurological disease, this can change very frequently.  I'm surprised that your neuro isn't ordering one.  I have very little medical knowledge, but I'm second guessing the statement made by your doctor that your exam was "normal" when he, himself, saw the myoclonic jerks.  This is not normal at all.  

I'm wondering if there's something going on with you spine.  Have you had an injury to your back or does your back hurt?  

Deb

[Sandpuff]

I don't mind the questions, thanks for asking!  

I had MRI's 10 years ago of brain and spine when the myoclonus first started and they were negative.  I had a brain MRI I think in 2000 maybe and that's the last one I've had.  I'm not diagnosed with anything.  I just had more blood tests today, my pcp is really trying to figure this out and I appreciate that.  She's checking for Lyme, West Nile, B12 and Vit. D I guess.  

The neuro was very evasive and I outright asked him his thoughts and he said something about this just being a snapshot in time and that there are a number of underlying causes of what I have going on.  My main symptoms right now in order of severity are fatigue (my biggest problem by far), myoclonus or jerks of my trunk and legs, my legs from my feet to my knee now feel like they are vibrating, and one of my toes gets an electric shock in it occasionally when I walk.

The only thing disabling to me is the fatigue, which was horrible the last 2 months.  I could barely handle being awake more than a few hours.  I took Provigil today for the first time and feel OK, but I need a nap now because I got up early and did quite a bit.  The more tired I get the more my legs vibrate.  Thanks for any input you may have, I think this is the best forum.

Michelle

[Wobbly]

well....that's a short exam..have you had a MRI yet?  of your brain and spine?  do you have other symptoms?  

have you had blood tests?  I know lots of questions...I just need more info not that I'm a Dr or anything... just difficult to answer if we don't know that much .. and I'm still drinking my coffee so I'm not yet awake..

are you Dx yet?

let me know
wobbly
undx..