I was never paralyzed, but did lose motor control of my right hand, and
my right hand and leg were very weak. I am left with tingling in both
feet and my right hand, but I am definitely ambulatory. The tingling
looks like its more a result of the biopsy than anything else. A lot of
the people in this group have had full, or near full recovery. Some
also have never recovered. You need to remember that folks who
subscribe to this group usually have some on-going issues with TM, so we
may not be representative of the TM world.
The hardest part for me psychologically has been the "waiting for the
other shoe to drop" feeling. Although my physicians originally told me
that this was a one time event, I didn't quite trust that. Strangely
enough, the new diagnosis helped, since at least MS is a little more
common and understood. According to my research, MS is actually a
series of myelitis incidents, that can occur in the brain, spinal column
and optic nerves. Sometimes specific antibodies are present in the
spinal fluid (hence the spinal tap) that indicate MS. However, a clear
spinal tap is not an absolute indicator that you do not have MS. So,
the diagnosis of MS can take several years, dependent on other attacks.
The good news is that you can go many years without another attack, and
the attacks can be rather mild (facial numbness is just irritating, but
not terrible).
This is a great group, and provides good information. Many of the
issues are the same, whether you have TM, myelitis, or MS. I'm glad you
have someone who is helping with the emotional issues. I guess the big
realization for me is that I need to find ways to do the things I enjoy
as much as possible. For instance, walking becomes very painful because
of the tingling, so I got an electric scooter for museums, shopping,
festivals, or anything that requires a lot of walking. I needed to
start thinking in terms of "how can I" instead of "I can't". Depending
on the extent of our individual disabilities, I think we are all trying
to live as normal a life as possible.
So this got so long.
> ----------
> From: SouthKen(AT)aol.com[SMTP:SouthKen(AT)aol.com]
> Sent: Monday, September 29, 1997 8:11 PM
> To: tmic-list(AT)eskimo.com
> Subject: Hello
>
> Hi eveyone!
>
> I am 29 and about a month and a half ago, on August 22, I ended up at
> the
> doctor's offfice and then the ER (over Labor Day weekend) with
> tingling and
> numbness from the shoulders down. I appear to be lucky. My swelling
> is at
> C4 and I never lost the ability to walk or breath - just some weakness
> the
> numbness. It has been about six weeks and I have feeling in my lower
> half,
> but still the odd tingling/numbness in my torso and in my hands. My
> hands
> are the worst - they get sorta stiff and sometimes ache.
>
> My neurologist ran every test possible - MRIs, spinal tap (loads of
> fun!),
> etc. and while she will not rule out MS she has diagnosed me with TM
> at this
> time. I am still rather in the dark, but at least you all seem to be
> an
> enormous support group - that is wonderful - I have felt so scared,
> confused,
> angry, etc - if anyone would be willing to email me with what they
> know I'd
> truly appreciate it! I am currently working with not only a
> neurologist, but
> also with a holistic therapist/healer - she is wonderful for support
> and
> keeping positive and helping me know I can keep this "condition" under
> control! I am still confused about whether or not my symptoms
> could/will get
> worse or if I am ok...anyone know???
>
> Anyway, I'd love to talk to someone who has had a similar experience
> in terms
> of having "less severe symptoms" - thanks - you all are in my prayers!
> Kelly
> SouthKen(AT)AOL.com
>