Jeanne...I got the feeling that Dr. Kerr is moving away from Lyrica...it
was very effective at first but now I think my body is to used to it and
I need to go to something else...at least I will have less munchies. I
believe in my case the banding and the fatigue go hand in hand. The
tighter my legs feel the more exertion I require to walk,stand etc.
I am actually excited to see if going off gradually the meds if I
will feel a difference. I now realize more than ever that exercise is
crucial to all of our conditions...as long as it is done in
moderation...I am going to do my best to keep to a schedule of going
swimming 3 x per week and on the days I don't swim I will get back to
sit-ups and try to strenghten my core (and maybe get rid of the beer
gut).
All the best!
Rob
PS: Dr. Kerr requested info regarding my underwater MP3 player as he
swims every morning. This new MP3 player is the best and most reliable
ever. It costs approx. $130 and is worth every penny. If you or anyone
else in the group wants further info just let me know....it is easy to
find...just Google "underwater MP3 player" and look for the Finis
Swimp3..it is truly remarkable!
________________________________ From: jrushton [mailto:[email protected]] Sent: Friday, July 03, 2009 12:40 AM To: Robert Pall Subject: Re: [TMIC] Visit with Dr. Kerr Thanks, Rob, We'll be anxious to hear what he gives you then we can make a fast trip to our own provider to get the same! The banding sure does wear you out, doesn't it? The Lyrica does take the edge off of the pain but it never goes completely away. Jeanne -------Original Message------- From: Robert Pall <mailto:[email protected]> Date: 7/2/2009 9:54:11 AM To: [email protected] Subject: [TMIC] Visit with Dr. Kerr I had my 11th annual checkup with Dr. Kerr yesterday and thought I would share my experience with the group. First of all I let him know what my main TM problems are ...which is the banding & fatigue. I also told him that I could not really say if the 2 TM meds I take which are 4-Aminopyridine (potassium channel blocker) & Lyrica are helping me at all. The plan we decided is that I would first wean myself of the 4-AP over the next 2 weeks and then begin to wean myself off of the Lyrica. After approx. 2 months which is the time it should take to be completely off both meds...Dr. Kerr will prescribe me 2 new meds (don't ask me their names)...one for the banding and another for the fatigue. He reiterated that swimming is the best exercise I can do and recommended no more than 3 hours a week and never 2 days in a row. He also stressed moderation (yeah like I will do that). Finally we spoke about the research going on now and down the pipe. Sometime in the next year human trials will begin on the newbies (onset less than 18 months)...and if these prove sucessful trials will start on the TM'rs who have had TM more than 18 months. I then said that the earliest I can be treated is near 4 years from now by which time I will have had TM for 16 years. I asked him if after this long a time is a cure a realistic thing for me to base hope on....he wouldn't say no...but he implied he was not at all sure if someone my age (61 now) could still be helped. This did not surprise or depress me...I have been told the same thing by numerous Doctors...so I will therefore accept the fact that I will always have TM and the best I can do is treat my symptoms as best as possible. Obviously new medications keep coming out and some may prove beneficial...but for my head it is easier to just have acceptance and be happy I am not worse than I am.....that being said I definitley see a light at the end of the tunnel for the newbies and younger members. I will keep you all informed regarding the getting off the old meds...and I will let you know the new meds (names) and the progress I make on them...to be continued! Rob in New Jersey
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