Hi Ken,
I agree with you. I took a lot of different pain killers and other medications over the years and they really did nothing for me other than to get me stoned. I currently take zero narcotics or benzodiazepines and haven't for over seventeen years. And I attempt to reduce my other medications as much as possible. When I hurt, I have found for me, I can curl up on the floor or bed and relax. Eventually the pain lessens. Stretching, and not over doing it are keys to reducing much of my pain. I have found that I have to accept my limitations and not do things that will cause pain. I too have learned to do a lot of praying when things get bad. I have also trained my self to try to think as positive as I can, keep focused on the things I can do and appreciate them. I know there are others in our group who don't have as much as I have. As the ole saying goes: "If he brings you to it, He'll bring you through it! It's good to hear from you again Ken. Keep smiling.
Larry in Oklahoma
Larry Throne, MSW
From: "Kenneth Oliver" <[EMAIL PROTECTED]>
To: [EMAIL PROTECTED], Tmic-list@eskimo.com
Subject: Re: [TMIC] numb hand
Date: Wed, 28 Feb 2007 00:01:05 -0600
Kevin, Larry & others,
I have been reading your comments about pain. I am in my 27th year with TM and will turn 82 in another month. I have had intense pain for a lot of years until a year ago when I was haveing a lot pain while taking so called pain killers, I decided to see what would happen I quit taking these. I found that I really did not have as much pain when I got off everything but anacin. I now take it when I get a headache, otherwise I lay down till the pain lessens. I have lost a lot of mobilty the last five years and use a power chair as I can not stand but a few minutes. I guess some of this can be counted for old age.
I have had bad experiences with pain clinics, one all he wanted to treat was his idea of what he wanted and that was anxity. Another put me on neaurontin and 2800 mgs. I ended up with losing a whole summer of memory loss and people thought I had had a stroke. It did not help my pain. When quit it about six weeks I was myself again. I have learned to do a lot of praying and that is where I go when become a 7-10.
Ken In Central Tx.
From: Kevin Wolfthal <[EMAIL PROTECTED]>
To: Tmic-list@eskimo.com
Subject: Re: [TMIC] numb hand
Date: Mon, 26 Feb 2007 21:55:20 -0500
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 wro! te:Kevin,
Where do you live??? Isnt there anyone to help you get some pain medication. Are you only on Xanax??? Twenty years of suffering, thats unreal. Its 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 theyve added MS to my condition! Im 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
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]
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
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