Trudy,
I live in CT. I've been to doctors and hospitals
here and in NYC. Every one said something different,
but when I asked for a painkiller, they refused. Usually
I hear: "you're already taking too many medications".
I take 2 BP drugs Vasotec & Metoprolol, Xanax, 81mg Aspirin/day, Effexor XR,
and Tylenol Rapid Release Gels.
Thank you for your understanding. Yes it is a horrendous nightmare. I was
coping pretty well for years, even worked for the first 12 years of TM
as the
Photographer for a University until I was in a car accident in 1998. Things
went downhill from there.
You are in my thoughts and prayers also.
Kevin
Trudy wrote:
Kevin,
Where do you live??? Isn't there anyone to help you get some pain
medication. Are you only on Xanax??? Twenty years of suffering, that's
unreal. It's been five for me and I try to take it one day at a
time... as each day is different, such a weird, weird disease. Now
they've added MS to my condition! I'm so sorry that you feel trapped
in this horrendous nightmare.
You are in my thoughts and my prayers!
Trudy
------------------------------------------------------------------------
*From:* Kevin Wolfthal [mailto:[EMAIL PROTECTED]
*Sent:* Monday, February 26, 2007 3:16 PM
*To:* tmic-list@eskimo.com
*Subject:* Re: [TMIC] numb hand
Candy,
Thank you for your reply. As I mentioned, I had 2 Mri's fairly
recently. I've had about
8 Mri's in the past 10 years, plus a full body bone scan, and several
EMG's. I'm not
sure what good another Mri would be.
The problem is, there are no doctors in my area that properly
understand TM, and I
am too sick to travel to John's Hopkins to Dr. Kerr's office. It took
me _7 years_ to
get a final diagnosis of TM, and that was at Yale Hospital, a
supposedly reputable
medical facility.
I have never even been able to get a doctor to give me any pain
medication. I was
given Xanax to help me sleep, and told that it would help my pain.
Today it feels
like my foot is being stabbed with a fork, and the fork is being
twisted around.
After almost 20 years of suffering, I pray every night that I pass in
my sleep. And
anti-depressants don't help, I've tried.
Kevin
Candis Kalley wrote:
Kevin,
For what it is worth, I was told by my Neuro, physcial therarpist, and
Dr. Kerr at John Hopkins, that the lesions cause trouble from the
point on.
I was first dx with lesions from T1 and T2 and possibly some at C4
down. After 25 days, the lesions appeared from C4 down to T2 - This
is when I had the shooting nerve "pain" tingling and then the next
morning I woke up to be a complete quadaparaligic. After PLEX
treatments, I regained most of the use of my hands and am able to walk
with a cane or walker. But I was left with hardly any energy and
strength.
Have a MRI as soon as possible - insist on it.
Candy K.
----- Original Message -----
*From:* Kevin Wolfthal <mailto:[EMAIL PROTECTED]>
*To: *Sandy Heidel
<mailto:[EMAIL PROTECTED]>;Tmic-list@eskimo.com
<mailto:Tmic-list@eskimo.com>
*Sent:* 2/25/2007 10:29:34 PM
*Subject:* Re: [TMIC] numb hand
My hands started getting numb a few years ago. I've had an MRI of
the thoracic spine
which didn't show anything, another MRI of the cervical spine
which showed "a lot of arthritis",
in the words of the neurologist. That neurologist also said that
the arthritis in my neck has
nothing to do with the numbness in my hands. She did an EMG and
said it showed Carpal
Tunnel Syndrome in both hands, and Ulnar nerve damage in my right
elbow. I've had
another EMG recently and was told that there is poor conductivity
not just in the nerves
in my hands, but other nerves coming from my neck. The doctor
doing that test said
if I had surgery for the CTS, it might not help. So I am supposed
to get tests for
hypothyroid, diabetes, and I don't know what else. I am fed up
with doctors, their tests,
and their guessing. Meanwhile I have trouble buttoning my shirt
and tying my shoelaces.
I was once told by a neurosurgeon that I had a ruptured disc in my
neck. I asked him if
that could be causing the numbness in my feet. He said: "how
could that be, your neck
is up there and your feet are down there". (This was before I had
a dx of TM.) Now forgive
me but I think it;s true that if nerves are damaged in the neck,
anything below that level
can be affected. But what do I know.
Kevin
Sandy Heidel wrote:
My TM lesions are in the C3 and C1. I have all kinds of numbness,
tingling and weird feelings in my hands. None of them are genuine.
Things that should cause pain do not and so on. But it may be a
sign that you are having some lesion activity higher up on your
cord. I would call and make an appt and get an MRI. They should
use the contrast dye and it will make any active lesions light up.
Good luck and don't delay,
Sandy
In snowy, snowy Wisconsin.
----- Original Message -----
*From:* [EMAIL PROTECTED] <mailto:[EMAIL PROTECTED]>
*To:* tmic-list@eskimo.com <mailto:tmic-list@eskimo.com>
*Sent:* Sunday, February 25, 2007 12:31 PM
*Subject:* [TMIC] numb hand
**Has anyone woken up at night with a numb hand?**
Twice in the last week, I've woken up during the night with my
left hand numb. The first time I just chalked it off as being
b/c I'd fallen asleep laying on my back on an ice pack for a
couple of hours. But when it happened again last night, I got
a little more concerned. Part of what makes me more concerned
is that for the last couple of weeks, my upper spine has been
feeling a bit weird. My TM lesion is T6 - T8, but now I'm
starting to worry about something higher in my back.
Now that I think about it, when I was jumping (lightly) on the
little trampoline at PT, I felt this funny feeling in my upper
spine (like maybe it was sort of jamming together). Then at
water exercise, I've started participating in the jumping
jacks that sort of does the same thing to my upper spine. Of
course, it's not like jumping on the ground b/c the water
cushions the movement, but maybe my body isn't ready for this.
Any experiences with these kinds of things?
Sally
