When I had a run on with cancer a few years ago, I realized that the
medical profession is still very much trying to figure out alot of the
diseases. So the doctors give it their best shot, and try the drugs and
treatments that seem to work best. Different doctors believe that
different treatments are the way to go, and, at least the good ones
experiment with the different alternatives for each patient until they
find the one that seems to work best. I found that as a patient I
needed to be pro-active and in their face. They see alot of patients,
and if you aren't complaining, they assume things are going OK.
Both with the cancer and now with the myelitis, I have a group to
discuss things with and to get information. In both cases, I have
brought suggestions to my doctors on what I have heard through the
groups. A group like this one is very helpful for me, beyond getting
info on whats available and where to look for more information. While
its terrible that any of us are dealing with this family of diseases,
its great to have others to "talk" to who understand what we are going
through. The group ranges from those who are totally paralyzed from the
neck down, to those who have been able to lead a somewhat normal life,
but are still dealing with various physical discomforts and
disabilities.
>----------
>From: Kevin Hasegawa[SMTP:"khase(AT)gte.net"(AT)gte.net]
>Sent: Wednesday, July 23, 1997 5:32 PM
>To: tmic-list(AT)eskimo.com
>Subject: transvers myelitis
>
>Hello, My name is Kevin Hasegawa;
>
>I have been recently diagnosed with transverse myelitis. It only took
>about 1 year for someone to diagnose the problem. I have been on
>Neuronton, Elavel, Soma, Darvaset and now MS Contin for the pain. Last
>week the pain became so intolerable that they started me on IV
>Solumedoral for 5 days. The doctor had to stop the steroid treatment
>because of fluid retention, weight gain and an elevated blood pressure.
>My Neurologitst wants to start me on Betaseron as a preventative
>measure, to prevent the loss of any other function. My left side is
>primarily affected and I walk with a cane.
>
>Can TM have a remitting, relapsing course? Has anyone else been
>prescribed Betaseron for TM. I have been dealing with the symptoms of
>TM for a year and a half, with no change. I feel as though the steroid
>treatment has set me back, not helped.
>
>Has anyone else been treated with Betaseron for TM? If so, what where
>your results. This is a very frustrating illness and no two doctors say
>the same thing.
>
>My primary care physician is not sure if Betaseron will help. Any
>advise.
>
>Kevin Hasegawa
>
>
>
>