[TMIC] New here, but old too

Thu, 23 Feb 2006 22:40:42 -0800

Dear Bob:
 
I'm sorry I haven't been very good lately about emailing have I?  I'm doing better now--honest.  I was so distraught when I wrote that first email to the group because I had been through so many nights of no sleep...  I don't want to jinx things by saying this out loud but I've slept better the past few nights.
 
I hadn't even thought of a UTI.  I just never get them but who knows when things will change.  My neuro wants me to come in to his office for a nerve conduction on my legs.  I kept on canceling my appointments because I can't get over there.  His office is in central Phoenix and I'm out in Apache Junction.  I don't drive and my son's been working and hasn't been a! ble to take me.  We are going to figure out a time though and my son will arrange his jobs around my appointment.  The doc also wants me to get in for another brain MRI.  He wants to see if there are new, active lesions.  (I think there are...)  He also wants to take a look at my neck where it was broken.  I need to get those things done.  I just hate having MRIs.  There's no sign of blood clots, no discolored skin, nothing like that.  If my funny little urinary spasms aren't better then I'll get in for a UA.
 
I'm not on any of the ABC drugs.  I was on Avonex but I stopped it two years ago.  I was just so tired of doing the shots. 
 
Thanks for being such a good friend.  I should have written to you!
 
love,
Sharon


ROBERT COOK <[EMAIL PROTECTED]> wrote:
HELLO, LOVE !!!!
 
DID YOU FORGET MY E-MAIL ADDRESS?
 
WHERE ARE YOU NOW?  I CAN CALL YOU FREE ANYWHERE IN THE CONTIGUOUS STATES.
 
TO ANSWER YOUR QUEST! IONS, HAVE YOU CHECKED FOR UTI?
 
ALSO, YOUR LEG PAIN/SPASMS, BESIDES MAYBE BEING CAUSED BY UTI, ALSO, AS WELL AS YOUR URINARY SPASMS, MIGHT BE CAUSED BY BLOOD VASCULAR CIRCULATION PROBLEMS.  LET'S RULE OUT ALL OTHER POSSIBLE EXPLANATIONS FOR YOUR PAINING, THEN WE CAN BLAME IT ON MS AND SEEK RE LEIF FROM DRUGS FOR THAT KIND OF PAIN.
 
YOUR DOCTOR CAN DO A DOPPLER ON YOUR LEG VASCULAR SYSTEM FOR CLOTS OR STOPPAGE DUE TO PLAQUE BUILDUP.  ARE YOUR FEET SPLOTCHY IN COLOR?  OR DARK OR BLUISH TOES OR FEET OR SWOLLEN?  THAT COULD BE DUE TO POOR BLOOD CIRCULATION.
 
ARE YOU TAKING ONE OF THE A-B-C'S?  MAYBE COPAXONE?
!  
HAVE YOU TRIED NEURONTIN FOR THE PAIN?  SOME SAY IT WORKS FOR THEM.
 
DO YOU REMEMBER JANIE DAHL?  SHE HAD TM, OR SO THEY THOUGHT, AND WAS LATER DIAGNOSED WITH MS.  SHE LIVES IN THE CALF AREA, I THINK.  I CAN GIVE YOU HER E-MAIL ADDRESS IF YOU WANT.
 
GREAT TO HEAR FROM YOU.
 
BOB
 
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----- Original Message -----
To:
Sent: 2/21/2006 4:21:36 PM
Subject: [TMIC] New here but old here, too

Hello to all:
 
I doubt anyone here will remember me but I used to belong to this group years ago.  I was diagnosed with TM after a major attack the Labor Day weekend when Princess Diana died (1997).  Then the following year I was diagnosed with MS and, feeling I didn't belong here any longer, I left this group and went on to form my own MS group on Yahoo (MSersLife). 
 
I love my wonderful bunch of friends on MSersLife but I am having more problems now and feel the need to talk to someone who wi! ll, hopefully, give me more advice and consolation than I am getting. Maybe the members on my MS group either have an easier course of disease than I'm having currently or the folks who could answer my questions are not reading my posts.  Who knows?  Anyway I thought of you people here.  When I was first dxed with TM, and the months after, this gr! oup helped me over and over again.
 
Here's what's going on with me.  I'm having really severe leg pain.  My neuro calls it neurogenic spasms but  he also calls it nocturnal spasms.  He put me Baclofen last month.  I started at 5 mg. and I'm now at 35 mg.   Each time I increase it I am able to sleep for 3 or 4 nights then the pain gets bad enough to keep me awake again.  Last night I was in too much pain again so I'll increase it tonight.  I'm also having some kind of urinary spasms--I'm not really sure how to describe th! em.  It happened all night last night and has been happening all day today.
 
I am just worn out from the months of disturbed sleep.  I have woken up at night crying and I've been dreaming about suicide.  I have always said I wouldn't kill myself because of my family --but you know it's bad when I dream about it, huh?  I just wan! t to be pain free.  I take hydrocodone for other pain but it doesn't work on this kind of pain. 
 
I guess I'm wanting someone to say they understand.  And please give me advice!
 
Sharon
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