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 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] To: 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
