Visit with Dr. KerrRob, thanks for the info. I have talked to my neuro in the
last 6 months and he told me of the studies also. The fact
that the studies are getting a closer timeline is encouraging. I am at 2 1/2
years and still very hopeful. Janice
----- Original Message -----
From: Robert Pall
To: [email protected]
Sent: Thursday, July 02, 2009 9:54 AM
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
