Kelly Jean,
I have had TM since January of 2007. I just turned 60 the month before. I
was paralyzed from the shoulder blades on down, but with proper meds, much
physical
therapy, and no one telling me that I would never do "whatever" again, I can
walk on my own, sometimes with my cane. The banding is not that much of a
bother
now either. I was lucky to be living in a medical center with excellent
doctors. By the 3rd day, they knew it was TM and had me on steroids
immediately and for
quite a while. It seems to have taken quite a while to get your diagnosis
and start on the proper meds, but don't give up. My husband never told me
the doctors
didn't think I would ever walk again - it would have ruined my fighting spirit.
If you feel you are not being treated properly, there
are those that have
gone to specialized places that have done research on the treatment of TM's
damage to the body.
Please keep emailing in to us. There is a lot of information that I know will
be forthcoming from the other "TM'ers". Just keep in touch with us and
good luck.
If nothing else, we are able to help take some of the "isolation" feeling that
we all seem to get from this disease being so rare.
Janice, Missouri
From: Kelly Jean Craig
Sent: Thursday, June 03, 2010 11:58 AM
To: tmic-list@eskimo.com
Subject: [TMIC] new member
Hi Everyone,
Well, I was reluctantly admitted to the TM group last week. My name is
Kelly Jean and I am 28 years old. I am a cancer research scientist, athlete,
wife and pug lover.
I was diagnosed after a strange string of events. I woke up two weeks
ago with a coughing episode that left me feeling like there was a constrictive
band around my chest. I thought I was having a heart attack. The ER visit left
me feeling better after they gave me a Toradol injection in the left cheek .
However, the next morning my toes felt numb and tingly on the injection side.
As the day went on I noticed, the numbness and sensitivity was growing. By the
next day, I couldn't stand to touch myself on the left leg. The worst
pins/needles sensation you could imagine. Myy husband, splashed water on my leg
near the garden and I fell down in pain. It was like someone poured liquid
nitrogen down my body. I received my PhD studying a movement disorder
(Parkinson disease), so I thought this could be peripheral neuropathy. I just
knew that the nurse who gave my that Toradol injection damaged by nerves and I
was having sensory neuron damage...little did I know.
After 5 doctor visits and everyone saying these sensations would pass, I
finally convinced another ER doc to give me an MRI. Almost 10 days later, they
found a T3 lesion on my spinal column and 2 small lesions in my brain. They
admitted me to the hospital and began my solumedrol treatments 1000mg/day x 5
days. The solumedrol nearly incapacitated me. I couldn't walk, lift my head,
speak or chew. I was release from the hospital and I am just now on day 2 of my
oral taper prednisone doses. I still feel like I am in a fog. My abdomen feels
like a tons of bricks. After nearly two weeks of bed rest, I am feeling
crippled physically and emotionally.
My head aches just after sitting up for a few minutes. Does anyone else
have this sort of reaction to the steroids? They did a lumbar puncture and we
are awaiting the CSF lab results to rule out MS. Perhaps, the puncture hasn't
fully healed yet. The doctors are guessing this was an infectious case of TM. I
am praying that this is a monophasic event and this suffering will soon be
over.
Does anyone have any suggestions? Massage therapy? Physical therapy?
Acupuncture? Reflexology? Homeopathic meds? I am desperate to be better. Any
and all advice is welcomed.
Sorry if this email seems to dance all over the place. Typing and reading
this email has tuckered me out today.
Thanks for your support,
Kelly Jean
--- On Mon, 5/31/10, Akua <a...@artfarm.com> wrote:
From: Akua <a...@artfarm.com>
Subject: Re: [TMIC] Shoes
To: "Cody" <c...@austin.rr.com>, tmic-list@eskimo.com
Date: Monday, May 31, 2010, 7:48 PM
I wear hose and crocks and remind myself to turn my feet -- was
getting a pressure sore on the side of my left foot from it laying on the side
of foot rest
went back to strapping feet in boots at night for a few nights
> I am having a terrible time with pressures sores on my feet. I am
interested in hearing what kind of shoes those of you who have to use
wheelchairs are wearing. My problem is my left foot turns inward and lays on my
footrest on its left side. And that's where the pressure sore is located on the
ball of my foot just behind my little toe. My wife just bought me a pair of
ankle high boots which hopefully will tend to keep my foot straight with the
ankle support. I have been wearing regular tennis shoes. I would be interested
in what others are doing for shoes. The podiatrist put me in one of the boots
with velcro they use when you have foot surgery. Because it has high ankle
support it has tended to keep my foot straighter...Cody in Austin
--
