Re: [TMIC] numb hand
Sally, I also have some numbness and tingling at night time. I have always chalked it up to the rotator cuff tear that I have on each shoulder. - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Sunday, February 25, 2007 1:31 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
Re: [TMIC] numb hand
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 forme, 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: "Ifhe 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.comSubject: Re: [TMIC] numb handDate: 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 whenI 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.comSubject: Re: [TMIC] numb handDate: Mon, 26 Feb 2007 21:55:20 -0500Trudy,I live in CT. I've been to doctors and hospitalshere and in NYC. Every one said something different,but when I asked for a painkiller, they refused. UsuallyI 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 wascoping pretty well for years, even worked for the first 12 years of TM as thePhotographer for a University until I was in a car accident in 1998. Thingswent downhill from there.You are in my thoughts and prayers also.KevinTrudy 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 PMTo: tmic-list@eskimo.comSubject: Re: [TMIC] numb hand Candy,Thank you for your reply. As I mentioned, I had 2 Mri's fairly recently. I've had about8 Mri's in the past 10 years, plus a full body bone scan, and several EMG's. I'm notsure what good another Mri would be.The problem is, there are no doctors in my area that properly understand TM, and Iam too sick to travel to John's Hopkins to Dr. Kerr's office. It took me 7 years toget a final diagnosis of TM, and that was at Yale Hospital, a supposedly reputablemedical facility.I have never even been able to get a doctor to give me any pain medication. I wasgiven Xanax to help me sleep, and told that it would help my pain. Today it feelslike 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. Andanti-depressants don't help, I've tried.KevinCandis 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 wal
Re: [TMIC] numb hand
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 whenI 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.comSubject: Re: [TMIC] numb handDate: Mon, 26 Feb 2007 21:55:20 -0500 Trudy,I live in CT. I've been to doctors and hospitalshere and in NYC. Every one said something different,but when I asked for a painkiller, they refused. UsuallyI 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 wascoping pretty well for years, even worked for the first 12 years of TM as thePhotographer for a University until I was in a car accident in 1998. Thingswent downhill from there.You are in my thoughts and prayers also.KevinTrudy wrote: 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 PMTo: tmic-list@eskimo.comSubject: Re: [TMIC] numb hand Candy,Thank you for your reply. As I mentioned, I had 2 Mri's fairly recently. I've had about8 Mri's in the past 10 years, plus a full body bone scan, and several EMG's. I'm notsure what good another Mri would be.The problem is, there are no doctors in my area that properly understand TM, and Iam too sick to travel to John's Hopkins to Dr. Kerr's office. It took me 7 years toget a final diagnosis of TM, and that was at Yale Hospital, a supposedly reputablemedical facility.I have never even been able to get a doctor to give me any pain medication. I wasgiven Xanax to help me sleep, and told that it would help my pain. Today it feelslike 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. Andanti-depressants don't help, I've tried.KevinCandis 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 To: Sandy Heidel;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 spinewhich 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 hasnothing to do with the numbness in my hands. She did an EMG and said it showed CarpalTunnel Syndrome in both hands, and Ulnar nerve damage in my right elbow. I've hadanother 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 saidif I had surgery for the CTS, it might not help. So I am supposed to get tests forhypothyroid, 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 neurosurg
Re: [TMIC] numb hand
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 To: Sandy Heidel;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
Re: [TMIC] numb hand
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
Re: [TMIC] numb hand
Call your doctor immediately. My friend started out slightly numb, and within a couple months now she cannot even type or feed herself, she can't hold a thing. I don't know if anything can be done to stop it once it starts, but call your doctor immediately. - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Sunday, February 25, 2007 1:31 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
Re: [TMIC] numb hand
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
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