More Tests - Firmly in Limbo Land

[JulesL5S1]

Good news and same old/same old.  

Good news.  My friends and co-workers are commenting on what a fantastic difference there is in me now.  I've been on Provigil for about 3 months and finally it is working.  I have approval from my doctor and I cut the 200mg pill into 3 parts and another pill into 4 parts and that makes my daily doses for an entire week.  So it amounts to 4 days of 50mg and 3 days of 65mg.  This works for me.  And there are no more heart palpitations.  Others here commented that it took several months before they saw a consistent result from Provigil.  I was doubtful but I can't argue with the results. My insurance company still hasn't approved it but I am getting enough samples for now.

First neuro appt of 2009.  The doctor has the results of the SEP on my legs and was "impressed" by the results.  There are definite problems with how my nerves transmit info to my brain.  He just isn't certain what is causing it.

He asked me what I thought was going on with my body and I did say that I believe it is MS but that I am stunned that there are no lesions on any MRIs.  

So future tests - blood tests galore to rule in/out even more, ambulatory EEG this weekend to rule out eplisey as the cause of my twitches, and a possible nerve biopsy in my left ankle and/or a spinal tap.

The neuro did comment that before MRIs it was a spinal tap and clinical observations to dx MS.  Hence why the spinal tap is now a possibility.  Only after less invasive tests are completed.

I'm not certain but I think the spinal tap is less invasive than a nerve biopsy.  Thoughts?

[doni54]

Hi Jules,

Sounds like you have got a good neuro there, congrats!!  

I'm glad the provogil is working for you, fatigue is an awful thing, isn't it?  To have any relief would be a major plus.

Good luck with all these tests and I hope you will have your dx soon.

Take care,
doni

[sllowe]

Wow, so he asked you what you thought huh? Isn't that something.

I have to say that I am impressed that this Dr. is willing to keep digging.  I shouldn't be impressed, as this is what Drs should do, but we just don't see it all the time.  Seems more often than not, it's just not happening.

Well, I don't have any experience w/the nerve biopsy.  I have had a spinal tap though and my suggestion is to go ahead and do it, but make sure the sample is well tested. Meaning that the Dr. write up the script looking for many things.  It will require much more fluid to be taken, but at least you won't have to go back.

We will gladly walk you through the do's and don'ts of pre-and post spinal taps.  Enough of us here w/experience in that dept.

That's my thoughts!
ttys,
Shell