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Date Posted: 12:09:04 07/15/00 Sat
Author: Roe's (getlurfed)
Subject: Re: Letters of introduction
In reply to: Limboland 's message, "Letters of introduction" on 17:01:48 05/26/00 Fri

Hello
First: thank you for this forum!
Ill start by saying Ive had a possitive mri about a year ago (several small lesions on ea. side) and an updated mri w/gad this time that showed a few fissure size lesions in the brain stem (YIKES!).
And a negative LP.
The brainstem lesions have me a bit freaked out but the neuro isnt convinced as theyre so minute to the eye. I hope he's right. Though they would explain the tremor, per him.
My neuro isnt ready to call it ms or anything else for that manner. My previous neuros are out of the picture as one quit for research and the associate of his, I was transferred to, is a "its all in your head guy". He said I had essential tremor if anything at all, MY new neuro said if it was essential tremor I wouldnt be tremoring at rest.
Im 35 and started noticing sx.s about 4 years ago after an outpatient surgury, my sister said why is your head shaking so much? (I did have severe health problems all my life tho")
I have a head and arm tremor that comes and goes w/ various severity. Im always quite relaxed when it occurs and this makes it hard to sleep etc...
Generally if I am over fatigued its bad and I feel horrible all over including my bladder spasms and trips to the bathroom every few min.
Sometimes my legs feel week and rubbery and I get tingling on the outside edges of my limbs that doesnt last to long.
My right eye seems to be an issue of sorts as my neuro concentrates on it a lot and I swear my vision is worsening in it.
An eye doc told me it expands and contracts (my pupil I assume) kind of spastically.
I do get "nerve burn" too.
I have periods where I cant think straight to the point where I wondered if I had a seizure disorder but that is not showing up soooo..
Im kind of just dealing with it myself and quit going to all the doctor refferals they give me as it is making me crazy with stress and I cant get the "its all in your head treatment one more time".
I will keep my neuro appt.s (checkups) every so many months but other then that unless I wake up numb or blind Im just going to try and live as best I can and let this go.
If anymore family med. docs or rheumos tell me I have chronic fatigue or fibro or whatever they call it this week I will pop!
With brain lesions and a tremor I doubt that.
They freely hand ya more controlled drugs for fibro then ms I find!
Which causes side affects that cover up other sx.s!
For me this fibro approach did not fly.
And my neuro and a Hopkins specialist said w/ brain lesions they highly doubt fibro is an issue.
So Im excercising (probibly too much for me) and trying to forget this.
Im sleeping on a regular schedule (I didnt used too, and it played havoc w/me)
Im a christian so Im giving it up to God as the earthly doctors dont seem to have a clue for me. After coming to this admission I do feel better I guess Ive accepted the new me a little more, which is my largest struggle lately.
And thats pretty much where im at.
OH, my mom wants to cure me with a nutrional diet after seeing the movie "first do no harm" and my sister wants me healed at her church services.
Both are great but Ive been there done that and obbviously this is where I am for now.
Thanks for having me here and listening too!
Best of luck to all of you on the journey!
Roe

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Replies:

  • Cheryl's Letter of introduction -- Cheryl O'Brien, 15:50:31 07/25/00 Tue
  • Re: Cheryl's Letter of introduction -- Cheryl O'Brien, 06:36:15 07/30/00 Sun
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