Every time my symptoms flare up the question of TM or MS comes up. No
one has been able to give me an answer in 41/2 years. My neurosurgeon
says this is out of his area and referred me to a great neurologist (I
didn't think one existed) at St. Mike's Hospital in Toronto.
The waxing and waning of your symptoms, from what I understand with any
spinal cord injury, is not unusual. Once the area has been traumatized
it may never heal completely and can be easily aggravated. I can relate
each one of my "flare ups" to a particular activity that aggravated my
injury. Once I used a heavy duty industrial sander to strip paint off
my front porch and another time my flare up came after I let a masseuse
work on my neck rather rigorously.
My neuro (the good one) just saw me and looked at all my films and said
he can't really make any confirmed diagnosis. His suggestion was for me
to enjoy the fact that my symptoms aren't worse (which he says is an
indicator of the severity of the prognosis) and to do anything I feel
comfortable doing (with caution for anything related to my neck because
of my previous surgery and fusion there).
On the HOPE side, he also said there are at least 4 new drugs that could
help if my symptoms worsen or become really bothersome. I hope this
doesn't happen but am relieved to know that there may be help.
To answer some of your questions, I recommend emotional support and a
good psychologist to help you keep things in perspective both when your
symptoms flare up and when they're O.K.
In terms of medications, I have never found any OTC drugs that help but
I have taken some prescriptions that have helped. Clonazepam is a drug
used to reduce the signal intensity in the spinal cord and brain for
epilepsy patients. It's also used for anxiety attacks. I took it for
anxiety and found that my symptoms became less severe. Could be the
reduced anxiety or the drug or both, but it helped.
Good luck
Peter
> ----------
> From: Jane Dahl[SMTP:dahl.j(AT)ghc.org]
> Sent: May 26, 1998 8:49 PM
> To: tmic-list(AT)eskimo.com
> Subject: Hi! I'm New. . .
>
> to this list, although I've had TM for just over a year now. It's
> been a long, hard haul to find information about the condition - the
> neurologist has been most unhelpful - and it's really and truly good
> to know that there are wonderful folks 'out there' to help answer my
> questions.
>
> 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
>