The discussion about the diagnosis of TM and MS has lead me to share my
feelings and experiences. Approximately 7 years ago, I started to develop
problems that were eventually diagnosed as MS. Due to moving, second
opinions, and my health care HMO being switched a number of times, I have
seen 7 neurologists since my MS symptoms appeared.
To this day, I have not had anything show up in a MRI or spinal tap to
conclude that I definitely have MS. The Doctors have concluded that since I
have the syptoms and a history of TM they believe it is MS.
After my initial depression of having another neurological disease, after
being told as a kid that TM is a one time occurrence, I have come to the
conclusion that whatever I am suffering from is what I call a neurological
disorder. Through my experience I have found that Neurology is a very inexact
science and there is still much they do not know. I have went to counseling
after my second attack of the nervous system and it has helped me deal with
the unknown.
Today, Tegretol has helped with the pain, the fatigue is getting worse and I
often wonder how much longer I can continue working, I now self cath and have
frequent UTI's, my walking is becoming worse and there are days that my
balance is a problem. I also take Paxil to try to keep my moods in check. I
recently applied for a handicapped sticker and use it only when I really need
it.
I guess living with the TM for all the years and the medical community not
understanding what it is all about, has made it easier to live with what I
have now. I wish they could figure it out and give me medication to treat my
MS symptoms. I wish they could let me know what I will have to face in the
future. But as of right now they don't and so I tell myself and others that I
have a neurological problem. I need to focus my energy to get through each
day. That doesn't mean that is the right way for everyone to think but for me
it works and I am comfortable with that.
On other topics...
I wish I could make it to Seattle to hear what is said in the workshops and
TM and MS. I hope the transcripts will be made available. Hey, how about
recording them and having them on realaudio?
When I received the mailing of the Seattle Conference I cried. I never met
another person who had TM until I was in my mid 30's. For almost 30 years I
felt so alone. Say what you want about the internet but it is my belief
without it I do not think there would be a conference. Thank you again Jim
Lubin for starting all of this. Thank you to those who have continued to
fight for research and answers. Thank you for those who have united us and
brought about the conference.
Al Weger
Sarasota, FL