We'll all be 'with' you, Barney and waiting to see how you are.

Please, all of you?  There is a little girl I watched every day that I drove
to work since she lived on the main street so I got to see her grow to the
age of about 8 and then they moved and I got the TM.  Just yesterday we got
word that she was hit with TM, also.  I don't know any details but I am
asking for thoughts and prayers for her and her family.  Jeanne

 
-------Original Message-------
 
From: Butcher, Bernie (S&FS)
Date: 7/16/2009 2:15:58 PM
To: Robert Pall;  [email protected]
Subject: RE: [TMIC] Medications
 
Hi Rob – do you take Baclofen? Next week I am going in the hospital for a
spinal tap trial before I get a Baclofen pump installed. I am wary about the
 whole thing
 
Barney



From: Robert Pall [mailto:[email protected]] 
Sent: Thursday, July 16, 2009 2:40 PM
To: [email protected]
Subject: [TMIC] Medications
 
        I mentioned previously that I visited Dr. Kerr on 7/1/09 and we
decided to adjust my meds. Presently for the most part I take 2 meds for the
banding, pins & needles and numbness. They are 4-Aminopyridine and Lyrica. I
was taking the 4-aminopyridine (a Potassium channel blocker) twice a day (20
mgs each)…I have been taking this medicine for approx. 8 years…..2 weeks ago
I cut my dosage in half and starting tomorrow I will cease taking this
med…so far I have not noticed any changes resulting in the lower dose and I
will keep you informed as to any changes I experience going off this med
completely. I also take 150 mg of Lyrica 3x per day. Starting today I will
cut this down to twice a day for 2 weeks and then once a day for 2 weeks
before stopping it altogether. Hopefully I will notice little or no change
getting off this medication which I have been on for more than 4 years.
        Assuming no problems getting off the Lyrica..Dr. Kerr will prescribe
a new med for the banding (don't ask me the name…I promise to let you
know)…he also said he could prescribe a new med to help with my constant
fatigue (again don't ask me the name).
        As per his advice I am now swimming for an hour at least 3 times a
week..it is not doing much for the TM but it is getting  my body in better
shape. Having had TM for almost 12 years my dreams of a cure seem more and
more distant..so I therefore vow to try and keep my body as healthy as
possible and deal with the pain and discomfort as much as medicine can help
me.
        I will keep the group informed as to the weaning off of my current
meds and any new meds I begin to take! 
All the best! 
Rob in New Jersey 
 

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