Re: Happy New Year From a New Member.

AZMAINIAC (AZMAINIAC(AT)prodigy.net)
Fri, 01 Jan 1999 09:31:02 -0800

Maz,
I am not a doctor, but did the doctors say anything about Guillain-Barre
Syndrome. It is similar to TM, but it only affects the peripheral
nervous system and its onset can be slow. Because you did not lose the
bowel and bladdder functions is why I wonder about the diagnosis.
Here is a place to check out in your country.
http://www.gbs.org.uk/
I thought that I had had Guillain-Barre Syndrome because there had been
a case in the hospital about 6 months before and the nurses looked at
the symptoms as the same.
I did no know until 6 years later when I went to Massachussetts General
Hospital for tests. It was then that I was told that I had TM.
It is true that laughter is the best medicine. I saw this when I had a
cystometrogram(a bladder test). I had 16 electrodes connected to me and
I could watch a graph recording of 8 of them. I would be lying quiet
watching activity on the graphs. when I asked questions, the activity
woud decrease.
The other thing that I saw was the output of and electrode connnected to
my right thigh. There was a spike on the graph about every 2 seconds.
When the technician touched ny left leg, the output from my right thigh
stopped.
John

Joe & Marion De Sisto wrote:
>
> Hi Everyone!
>
> My name is Marion, but I'm most often known as Maz. I intend writing
> my experience of how I developed TM in the appropriate 'history' area,
> so I'll just be brief about it here. It began on May 13th 1998 and
> took exactly three months (August 13th) to reach its peak.
> Coincidently, this was also the date I was admitted to Guy's Hospital
> here in London, UK. The neurology team told me they had not seen such
> a slow development of TM before, they said it usually struck in a
> matter of hours or days. I have my own theory as to why it took so
> long and I'll explain this in my 'history.' I was in the hospital for
> eleven days, spending my time in bed or a wheelchair because I had
> lost all mobility and sensory input from the waist down. The TM was
> located at T11 and T12. Apart from puzzling the docs about the slow
> onset, they were also surprised that my bladder and bowels were still
> functioning, and that within two days of being there (before receiving
> massive doses of their 'cure-all' Cortisone) they began to see
> improvements. I left the hospital, having been fitted for a
> wheelchair and issued a walking frame with which I had managed a
> couple of staggering steps in Physio on my last day. Ten days later,
> when I returned to Physio, my therapist was astonished to see that I
> didn't need the walker and was ready for a cane. Very soon after that
> I no longer needed the cane, but I do still have it with me when I'm
> out. This is on the advice of my therapist, she said it alerts people
> to the fact that I do have a problem and am not as steady on my feet
> as they may think.
>
> How am I now? As yet I haven't been able to return to my job and may
> never as it requires me to be on my feet a great deal. I have the
> usual numbness (but nothing like it was), discomfort and weird
> sensations in my butt, legs and feet and these intensify once I'm on
> my feet. I have pain in my lower back when I bend and if I stay on my
> feet for too long, but the length of time without it keeps
> increasing. I can't sit down on the floor or in a bathtub, but I'm
> still persevering with this. (Bless the soul who invented
> showers!!!) I have to lie on my right side to sleep, that's the least
> uncomfortable, and I'm up several times in the night because of
> stiffness and some pain after lying still for two or three hours.
> Perhaps to other people this would sound rather bleak, but I'm sure
> you all can realize how grateful I am, knowing it could be much
> worse. As a therapist and healer I've had access to several
> complementary therapies and distance healing which I know have helped
> me, and I'm happy to write more information on these if you guys would
> like me to. In addition, I'm taking vitamins and herbs which again (I
> believe) are making a positive difference. I'm also a great believer
> in the healing power of laughter and so from time to time (but, again,
> only if you want me to) I'll share a few 'funnies' with you.
>
> Check out my website http://www.soul.cc/facetsoul to see the kind of
> stuff I'm into, and also my older son's URL http://www.soul.cc which
> has proved helpful to a number of people (go to the "Healing Page").
>
> I wish you all a year of Peace, Love, Hope and Self-Healing.
> Light-filled Blessings, Maz.