Rick,
I agree with what you are saying and fully support Sandy's effort. My initial
treating doctor is now deceased. Since then, I've known more about TM than most
of the doctors I've seen. I really haven't had any treatment for TM since I
first got sick back in 1974 but I have been treated for pain management, UTI's,
physical therapy,ect...
I think many of us are in the same boat or just don't want to refer anyone to
their doctor. I've seen many Neuro's over the years and can't recommend any of
them. Most were distant, cold and just wanted to write narcotic scripts to get
me out of their hair. I have done every thing I can to forget who they were.
From some of the post I have read over the years, there are a lot of us in the
same situation. Regardless, I still agree with you and Sandy and encourage
others to help Sandy with this endevor.
Larry in Oklahoma who has enjoyed the sunshine today.
> From: [EMAIL PROTECTED]> To: tmic-list@eskimo.com> CC: tmic-list@eskimo.com>
> Date: Tue, 8 Jan 2008 21:53:33 +0000> Subject: [TMIC] Spring newsletter> >
> Dear membership, This is Rick in Tn. Back in spring in our newsletter, Sandy
> had issued a challenging project to us and had very little response to it,
> which is an absolute shame. The initative was to instigate a data-base of
> your Drs., Your main Dr. that you visit on a regular basis. This is the Dr.
> that hopefully is helping you to live with your case of TM. The shame is that
> only nine of us responded to Sandy's request. The objective of this data-base
> is to give your Dr. a real live place where he or she can get access to
> information about the treatments available to help your Dr. best treat your
> individual case of TM or any of the other afflictions that are in the scope
> of our group, be it TM, ADEM, MS ect. I just got off of the phone with Sandy
> and I feel that he was about to give up on the notion. This is not good
> simply because it gives your Dr. a data-base that they may go to where they
> can get the most up to date information on the range of treatments available
> to us!> . This > is for our benefit and also and most important your Dr. can
> find ways to help us survive with this monster. It would be an absolute shame
> to let this idea just slip away without a chance to see if it will help us
> and our DRs. And by the way Sandy wanted me to say Hi to all of you and to
> wish you all a healthy New Year.> > Now here is another chance for us to get
> this data-base into reality mode. All you have to do is send Sandy in an
> e-mail or call him with contact information about your Doctor, such as first
> Their Name,the organization they work at, Their address,city state and zip
> code,Their phone number include area code,and most important their e-mail
> address. You should make sure that this is cool with your Dr. Listen folks
> this is for our benefit and the importance of this is of the highest
> priority. Sandy told me that this is going to be a very difficult process,
> but together we can make it work. Our Drs. need to know what is available to
> them and to our treatment. Make sure your Doctor understands that all of his
> information will be kept in a completely safe and secure data-base free of
> infestation. Now, Sandy assured me that this will not be a simple process so
> if you have any valid suggestions on setting up a data-base your expertise
> will be wanted if not required. People Please,!> this i> s something of a
> breakthrough and it will require some of the best minds we have. Sandy has
> initiated a very challenging project, so lets not let him down. Your Spring
> Newsletter 2007 touches on this so dig them out and read from the first page
> of Volume7 Issue 2 (from the editor). Together we can make this a reality and
> another source for us to get the type of help we need and deserve. Please
> lets don't drop the ball, this will require a concerned effort from everyone
> so , LETS GET IT DONE> Thanks and God bless us all. Rick Ashford in
> Tennessee. 01/08/08> >
