Re: [TMIC] New Address...please add to your address book
Hi, Mark, Some years ago there was an informal study done of people in the Transverse Myelitis Association, and about 1/3 of the respondents had no visible lesion on the spine. I was one of those. I believe my spinal fluid came back clear as well. My dr. said I was diagnosed based on my symptoms adn the ruling out opf other things, like MS, lupus, etc. Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 3/3/2007 12:13:04 PM Eastern Standard Time, [EMAIL PROTECTED] writes: Refresher: I was diagnosed with TM from the head of Neurology at Temple Hospital in Philadelphia at the end of Oct. 2006. I believe he felt it was TM through process of elimination. All of the doctors there at first felt it was an AVM. But after two angeograms the AVM was never found, therefore TM. PS: My MRI and spinal tap did not show TM!! On January 31st I had an appointment with Dr. Greenburg at Johns Hopkins in Baltimore. As of today I do not think he believes that I have TM. He too thinks I have an AVM and that the doctors at Temple missed something. Since Jan. 31st his team, Neurology, Radiology, Neuro-surgery, etc. are still reviewing my films and CDs. I was supposed to hear from Dr. Greenburg last week. Nothing yet. But I am being patient. My symptoms are still the numbness from the waist down to my toes. Paying special attention to my feet, thighs and butt. The worst is the inability to urinate on my own. I have not gone on my own since Sept. 21st when I entered the hospital for a 6 week stay. Now I am cathing 4-5 times a day. I am not in any pain other than the bottoms of my feet and my but when I sit on a hard surface too long. I work out in my basement at least five times a week. I am stronger but not better! I don't think my friends understand that. They see that I can walk now with a cane. Sometimes without the cane. (Short distances). They look at me and say I look great and it is hard for me to make them understand that I am numb from the waist down 24/7. And I am tired of explaining it! I hope Dr. Greenburg calls soon with some answers. Not knowing is difficult. Everyone take care and keep fighting!! Mark Marlton, New Jersey BRBRBR**BR AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
RE: [TMIC] New Address...please add to your address book
My MRIs and taps don't show TM either, they say my problem now is scar tissue in the spinal column BERNARD BUTCHER From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Saturday, March 03, 2007 12:13 PM To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] New Address...please add to your address book Hello Everyone, I have not been on line for about a month. I am so sorry to hear the stories about the pain, numbness and other problems that many of you are having. Hang in there it has to get better!! Refresher: I was diagnosed with TM from the head of Neurology at Temple Hospital in Philadelphia at the end of Oct. 2006. I believe he felt it was TM through process of elimination. All of the doctors there at first felt it was an AVM. But after two angeograms the AVM was never found, therefore TM. PS: My MRI and spinal tap did not show TM!! On January 31st I had an appointment with Dr. Greenburg at Johns Hopkins in Baltimore. As of today I do not think he believes that I have TM. He too thinks I have an AVM and that the doctors at Temple missed something. Since Jan. 31st his team, Neurology, Radiology, Neuro-surgery, etc. are still reviewing my films and CDs. I was supposed to hear from Dr. Greenburg last week. Nothing yet. But I am being patient. My symptoms are still the numbness from the waist down to my toes. Paying special attention to my feet, thighs and butt. The worst is the inability to urinate on my own. I have not gone on my own since Sept. 21st when I entered the hospital for a 6 week stay. Now I am cathing 4-5 times a day. I am not in any pain other than the bottoms of my feet and my but when I sit on a hard surface too long. I work out in my basement at least five times a week. I am stronger but not better! I don't think my friends understand that. They see that I can walk now with a cane. Sometimes without the cane. (Short distances). They look at me and say I look great and it is hard for me to make them understand that I am numb from the waist down 24/7. And I am tired of explaining it! I hope Dr. Greenburg calls soon with some answers. Not knowing is difficult. Everyone take care and keep fighting!! Mark Marlton, New Jersey ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
Re: [TMIC] New Address...please add to your address book
Not knowing is so frustrating although you don't want a worse diagnosis than you already have! Today I am going back to Temple Hospital in Philadelphia for a urodynamic(sp) test on my bladder. Has anyone ever had one? What should I expect? Mark Marlton, NJ ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
RE: [TMIC] New Address...please add to your address book
Interesting. This is related to something I've wondered about: If 'TM' is 'inflamation of the myelin', which of course we've already been treated for, then do we really still have TM? I was treated with 5,000 mg methyl-prednisone during the first 5 days after my sudden (with-in 30 min) paralysis on my right side below my rib cage. My understanding was that the treatment completely cleared up the inflammation. So what I'm really dealing with is not TM, but the SIDE-EFFECTS OF TM (nerves that have been damaged), as well as the SIDE-EFFECTS of all that methyl-prednisone! Isn't that correct? Sally
RE: [TMIC] New Address...please add to your address book
Yes, that is my understanding, the scar tissue is my problem now. I even asked my neuro: is it now - what I see is what I get? she said yes, we can only treat the symptoms now, can't go in there to fix anything, or more damage would occur. In December of 2005, after my hospital stay, I was put on oral prednisone, 40mg/day for 30 days. After that, I felt great, ready to throw away my cane. But then I got worse again - I have since gotten IV prednisone treatments, 1,000 mg over three days (IV) - I didn't get the same results, as a matter of fact, it made me quite ill for a few days. I'm due for another now (once every three months). I'm on the walker now, I guess I really can't complain too much, some have it worse, some, much worse. BERNARD BUTCHER From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, March 07, 2007 1:50 PM To: Butcher, Bernie [SFS] Cc: tmic-list@eskimo.com Subject: RE: [TMIC] New Address...please add to your address book Interesting. This is related to something I've wondered about: If 'TM' is 'inflamation of the myelin', which of course we've already been treated for, then do we really still have TM? I was treated with 5,000 mg methyl-prednisone during the first 5 days after my sudden (with-in 30 min) paralysis on my right side below my rib cage. My understanding was that the treatment completely cleared up the inflammation. So what I'm really dealing with is not TM, but the SIDE-EFFECTS OF TM (nerves that have been damaged), as well as the SIDE-EFFECTS of all that methyl-prednisone! Isn't that correct? Sally
Re: [TMIC] New Address...please add to your address book
Hi Jude - Welcome back and yes we have missed you! It is great to hear that you are feeling so much better. Just makes everything around you seem better, doesn't it. Ok now that you're back, jump in! Linda - Original Message - From: Trudy mailto:[EMAIL PROTECTED] To: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] ; tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Friday, March 02, 2007 9:35 AM Subject: RE: [TMIC] New Address...please add to your address book Jude~ You have been missed. I was just about to send the Marines out looking for you. What great news. You sound awesome. Life here on the list goes on as usual. Lots of good info. People sharing their honest feelings about how TM has changed their lives. It's good, it's all good. So welcome back!!! Trudy -- From: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, March 01, 2007 9:47 PM To: tmic-list@eskimo.com Subject: [TMIC] New Address...please add to your address book Hi Guys, I'm Back...Oh I missed you all so much! I haven't been online in, well it seems like, forever. Now I am excited to be back on the list. What's been going on? Did I miss anything? I have good news. Saw a neurologist for the first time in five years...said there is nothing new for me...I knew that. Then I went to Tissue Trauma and that was another story. The nurse in charge is getting me hooked up with some of the programs for the disabled in the area. She put some foam dressings on my pressure sores and I am pain free for the first time in a long, long time. Things are finally looking up. How has everyone been? I hope that there is no bad news to hear...What about new members? Those of you who write me regularly, do so at this new address. My replacement computer would not let me sign on with my previous address...who knows why? Anyway, catch me up on all the latest... Peace and Prayers, Jude -- AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.comhttp://pr.atwola.com/promoclk/1615326657x4311227241x4298082137/aol?redir=http%3A%2F%2Fwww%2Eaol%2Ecom.
Re: [TMIC] New Address...please add to your address book
Hello Everyone, I have not been on line for about a month. I am so sorry to hear the stories about the pain, numbness and other problems that many of you are having. Hang in there it has to get better!! Refresher: I was diagnosed with TM from the head of Neurology at Temple Hospital in Philadelphia at the end of Oct. 2006. I believe he felt it was TM through process of elimination. All of the doctors there at first felt it was an AVM. But after two angeograms the AVM was never found, therefore TM. PS: My MRI and spinal tap did not show TM!! On January 31st I had an appointment with Dr. Greenburg at Johns Hopkins in Baltimore. As of today I do not think he believes that I have TM. He too thinks I have an AVM and that the doctors at Temple missed something. Since Jan. 31st his team, Neurology, Radiology, Neuro-surgery, etc. are still reviewing my films and CDs. I was supposed to hear from Dr. Greenburg last week. Nothing yet. But I am being patient. My symptoms are still the numbness from the waist down to my toes. Paying special attention to my feet, thighs and butt. The worst is the inability to urinate on my own. I have not gone on my own since Sept. 21st when I entered the hospital for a 6 week stay. Now I am cathing 4-5 times a day. I am not in any pain other than the bottoms of my feet and my but when I sit on a hard surface too long. I work out in my basement at least five times a week. I am stronger but not better! I don't think my friends understand that. They see that I can walk now with a cane. Sometimes without the cane. (Short distances). They look at me and say I look great and it is hard for me to make them understand that I am numb from the waist down 24/7. And I am tired of explaining it! I hope Dr. Greenburg calls soon with some answers. Not knowing is difficult. Everyone take care and keep fighting!! Mark Marlton, New Jersey ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
Re: [TMIC] New Address...please add to your address book
Jude--You were missed. You were always writing good emails when I first got on the list (this April will be 3 years since the onset of my TM) so you were pretty much a big part of the list. Hope that continues. Gary in Michigan - Original Message - From: Trudy To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Friday, March 02, 2007 11:35 AM Subject: RE: [TMIC] New Address...please add to your address book Jude~ You have been missed. I was just about to send the Marines out looking for you. What great news. You sound awesome. Life here on the list goes on as usual. Lots of good info. People sharing their honest feelings about how TM has changed their lives. It's good, it's all good. So welcome back!!! Trudy -- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, March 01, 2007 9:47 PM To: tmic-list@eskimo.com Subject: [TMIC] New Address...please add to your address book Hi Guys, I'm Back...Oh I missed you all so much! I haven't been online in, well it seems like, forever. Now I am excited to be back on the list. What's been going on? Did I miss anything? I have good news. Saw a neurologist for the first time in five years...said there is nothing new for me...I knew that. Then I went to Tissue Trauma and that was another story. The nurse in charge is getting me hooked up with some of the programs for the disabled in the area. She put some foam dressings on my pressure sores and I am pain free for the first time in a long, long time. Things are finally looking up. How has everyone been? I hope that there is no bad news to hear...What about new members? Those of you who write me regularly, do so at this new address. My replacement computer would not let me sign on with my previous address...who knows why? Anyway, catch me up on all the latest... Peace and Prayers, Jude -- AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.
Re: [TMIC] New Address...please add to your address book
Hey Jude, So glad to see you're back on the list. You've been missed! I don't e-mail you at your e-mail address, but I was used to reading your comments and advice on the message board. Glad you're back. Naomi BRBRBR**BR AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
