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
