To try and keep the story brief, on Mother's Day '97 the weather was
very warm - the high 80's. The family enjoyed the hot tub at my
parent's house. When I got out of the tub, I found that my sandals
had been moved so I had to run across a blisteringly hot deck
barefoot. My four year old niece got out of the tub just as I made it
to the door and started screaming. I dashed back across the deck,
still barefoot, snatched her up and went back across the deck a third
time. I had sore feet but end of story - or so I thought.
Three days later I woke up numb from the ribs down. I'm one of the
really lucky ones. . .I could move and walk albeit with difficulty.
Balance seemed to be the biggest problem. I went to work but called
the doctor. I was seen by a general practitioner right away who
confirmed that my feet had been blistered, but said that the numbness
was 'something different.' All sorts of blood tests were done and a
spinal x-ray taken, but nothing showed up. After two weeks, I was
referred to a neurologist. It took some time to get in to see the
neurologist. By this time I was terrified I had MS. (I can count 6
people I know who have MS so I'm not totally unfamiliar with the
symptoms.) The neurologist didn't discount MS but didn't offer any
other explanations either. He just told me it might be an autoimmune
response to a virus. He adopted a wait and see stance, although he
did finally send me for an MRI. The MRI was negative. He continued
the waiting to see if I would get better or develop other symptoms.
Finally in late August I got vocal. He sent me for another MRI, this
one of the entire spine and skull. Turned out the first MRI was of
the lumbar area - the wrong area. TM was diagnosed at the T7 - T12
area. Even then, the neurologist did not explain TM to me or what I
could expect. He just said to check back with him in a few months and
to quit the chiropractor I had just started seeing. I told him to
blow it out his ear!
Anyway, I'm one of the lucky ones. I can still walk, although
looking back at those first 6 months I wonder how I did it. I
continue to see a chiropractor and, contrary to the medical doctors,
it has been beneficial. I have improved a lot, but I'm still pretty
continually numb from the knees down. I read where a common symptom
of TM is a tight banding around the rib cage. I get that sensation
around my knees and ankles, occasionally at hip/waist level. I
overdid it a couple of weeks ago and had a flare-up which affected
bladder/bowel control somewhat. I have a hard time explaining to
people that my limbs can go from "normal" numb to "really" numb and
back again a number of times throughout the day. And the really,
really hard part is dealing with people's lack of understanding when
they see someone who "appears" to walk fairly normally (I work hard
every single day in order to do that) but can't go very fast or needs
help going down stairs. Aaaargh!
I have questions, which is what prompted me to subscribe to the TMIC
list. I've been reading the e-mail regularly, but have been shy to
step forth. However, I need some of your expertise!
First, as I said, I've had this for just over a year now. Can I
expect to get any better or is this it? I seem to have not made any
progress in the last several months. I think I need some emotional
help if this is 'it.'
Second, is it normal to slide in and out of "normal" numb and "worse"
numb and back again?
Third, numb is sometimes accompanied by various pain, from achiness
in my spine to prickly needles in my feet, none of which is too
severe. For that reason I don't wish to take a medication the doctor
said he would prescribe. However, has anyone found an OTC product
that helps the symptoms?
>From afar I appreciate all the help and support you all have already
given me. I'll do my best to support you, too! And I promise I won't
be so long-winded again!
BTW, has any thought been given to raising money for the Association
by selling shirts with the new TM logo? I'd be proud to wear one!
Thanks again.
Jane Dahl
Seattle, Washington