Re: [TMIC] Re: tmic-digest Digest V2008 #431
Jenna, it must be 'where' the lesion is and how much damage it has or they have done. Also, I think it also my have to do with how long it went on from the onset before anything was done to 'stop' it?? Your earlier comment, who knows for sure is right on! Jeanne ---Original Message--- From: Jenna Date: 11/24/2008 8:13:40 PM To: Pieter and Heather; [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 It is complicated. But I have 3 lesions on my spine. And damage to my optic nerve. So since the damage to the optic nerve was first, before the first problems showed up in the spine, it is call Divic's version of MS. I hope this makes some kind of since. But the weird thing to me is so many of you my friends have no lesions, just inflammation and can not walk and here I am with 3 lesions and can still walk??? Jenna From: Pieter and Heather [EMAIL PROTECTED] To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Monday, November 24, 2008 2:20:58 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 That is the way I understand it too Jude. My sister who is 3 yrs younger than me has MS. It is the one that progresses slowly but everytime she has and MRI she has more lesions on both spine and brain. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, November 24, 2008 12:06 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Hello All, It has been my understanding that with TM one must have lesions on the spine but not on the brain. If one has lesions on the brain it is indicative of MS. Am I misinformed regarding this information? God Bless You, Jude In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Frank, They were never able to locate a lesion on my spine and from what I have read on the message forums this is true for alot of people. I had mutiple MRIs done both with and without contrast. Lynne --- On Sun, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC tmic-list@eskimo.com Date: Sunday, November 23, 2008, 4:30 PM i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? What does swelling from c6-t3 and t9-t10 mean?? Did you have an MRI with and with out gadolium (enhansement)? F One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today! 17.jpg
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Hello All, It has been my understanding that with TM one must have lesions on the spine but not on the brain. If one has lesions on the brain it is indicative of MS. Am I misinformed regarding this information? God Bless You, Jude In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Frank, They were never able to locate a lesion on my spine and from what I have read on the message forums this is true for alot of people. I had mutiple MRIs done both with and without contrast. Lynne --- On Sun, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC tmic-list@eskimo.com Date: Sunday, November 23, 2008, 4:30 PM i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? What does swelling from c6-t3 and t9-t10 mean?? Did you have an MRI with and with out gadolium (enhansement)? F **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001)
Re: [TMIC] Re: tmic-digest Digest V2008 #431
AOL EmailThat is the way I understand it too Jude. My sister who is 3 yrs younger than me has MS. It is the one that progresses slowly but everytime she has and MRI she has more lesions on both spine and brain. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, November 24, 2008 12:06 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Hello All, It has been my understanding that with TM one must have lesions on the spine but not on the brain. If one has lesions on the brain it is indicative of MS. Am I misinformed regarding this information? God Bless You, Jude In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Frank, They were never able to locate a lesion on my spine and from what I have read on the message forums this is true for alot of people. I had mutiple MRIs done both with and without contrast. Lynne --- On Sun, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC tmic-list@eskimo.com Date: Sunday, November 23, 2008, 4:30 PM i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? What does swelling from c6-t3 and t9-t10 mean?? Did you have an MRI with and with out gadolium (enhansement)? F -- One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Yes, that's right, but some people have no lesions at all show up on the MRI on spine or brain. I was one. Perhaps they are too small to show up? I don't know Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 11/24/2008 2:07:13 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Hello All, It has been my understanding that with TM one must have lesions on the spine but not on the brain. If one has lesions on the brain it is indicative of MS. Am I misinformed regarding this information? God Bless You, Jude In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Frank, They were never able to locate a lesion on my spine and from what I have read on the message forums this is true for alot of people. I had mutiple MRIs done both with and without contrast. Lynne --- On Sun, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC tmic-list@eskimo.com Date: Sunday, November 23, 2008, 4:30 PM i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? What does swelling from c6-t3 and t9-t10 mean?? Did you have an MRI with and with out gadolium (enhansement)? F **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001)
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Good. I hate to be spreading wrong information to others with TM. This is the only site I email to because of the fear of becoming confused about illnesses. My brain is simply not what is used to be. You know what? I used to be Mensa material but now I become confused so easily and am so forgetful that I hate to impart information to anyone. Is it because of the disease or the drugs I take to combat the TM? Love to all, Jude In a message dated 11/24/2008 2:21:21 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: That is the way I understand it too Jude. My sister who is 3 yrs younger than me has MS. It is the one that progresses slowly but everytime she has and MRI she has more lesions on both spine and brain. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) To: [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) ; [EMAIL PROTECTED] (mailto:tmic-list@eskimo.com) Sent: Monday, November 24, 2008 12:06 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Hello All, It has been my understanding that with TM one must have lesions on the spine but not on the brain. If one has lesions on the brain it is indicative of MS. Am I misinformed regarding this information? God Bless You, Jude In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time, [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) writes: Frank, They were never able to locate a lesion on my spine and from what I have read on the message forums this is true for alot of people. I had mutiple MRIs done both with and without contrast. Lynne --- On Sun, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC tmic-list@eskimo.com Date: Sunday, November 23, 2008, 4:30 PM i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? What does swelling from c6-t3 and t9-t10 mean?? Did you have an MRI with and with out gadolium (enhansement)? F One site has it all. Your email accounts, your social networks, and the things you love. Try the new _AOL.com_ (http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dpicid=aolcom40va nityncid=emlcntaolcom0001) today! **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001)
RE: [TMIC] Re: tmic-digest Digest V2008 #431
Hi Jude - when I was diagnosed with TM, my neuros saw lesions on my spine - then (a year ago) I started seeing double - MRI showed lesion on my optic nerve - - boom . . . MS. Barney From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Monday, November 24, 2008 2:29 PM To: [EMAIL PROTECTED]; TMIC-LIST@eskimo.com Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Good. I hate to be spreading wrong information to others with TM. This is the only site I email to because of the fear of becoming confused about illnesses. My brain is simply not what is used to be. You know what? I used to be Mensa material but now I become confused so easily and am so forgetful that I hate to impart information to anyone. Is it because of the disease or the drugs I take to combat the TM? Love to all, Jude In a message dated 11/24/2008 2:21:21 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: That is the way I understand it too Jude. My sister who is 3 yrs younger than me has MS. It is the one that progresses slowly but everytime she has and MRI she has more lesions on both spine and brain. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, November 24, 2008 12:06 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Hello All, It has been my understanding that with TM one must have lesions on the spine but not on the brain. If one has lesions on the brain it is indicative of MS. Am I misinformed regarding this information? God Bless You, Jude In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Frank, They were never able to locate a lesion on my spine and from what I have read on the message forums this is true for alot of people. I had mutiple MRIs done both with and without contrast. Lynne --- On Sun, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC tmic-list@eskimo.com Date: Sunday, November 23, 2008, 4:30 PM i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? What does swelling from c6-t3 and t9-t10 mean?? Did you have an MRI with and with out gadolium (enhansement)? F One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir =http://www.aol.com/?optin=new-dp%26icid=aolcom40vanity%26ncid=emlcntaol com0001 today! One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir =http://www.aol.com/?optin=new-dp%26icid=aolcom40vanity%26ncid=emlcntaol com0001 today!
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Jude, that was what I was told from three neurologists. j
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Barbara, the first three MRI's that were done were when I was in ER and they didn't see anything. It wasn't until I got into Harborview in Seattle that the neuro found the lesion. None on the brain at that time and still no new ones on the spinal cord nor on the brain. Thank God for that..j
Re: [TMIC] Re: tmic-digest Digest V2008 #431
I just got off of the phone with Patti and she seems to be doing quite well. I guess I have not been posting as much as I thought, because she mentioned not hearing from me too. Sorry everyone. I guess that I am having a minor pity party and don't feel like other people care to hear about my woes when they have troubles of their own. I can't imagine having TM the way I do and trying to raise a family at the same time. Those of you with children have a blessing and a burden at the same time. And I mean that in the most loving way. If Dave and I had children, with me being paralyzed, our children would be sorely lacking in so many ways. Dave would have made a wonderful father, so patient and kind, but I don't know what I could have contributed. I feel terribly guilty because I don't give Dave all of the loving appreciation he deserves as my husband. But most of the time I am in too much pain to feel like being intimate. Am I wrong? Should I try harder? Should I try to hide the pain and force myself? Or, should I continue to smile when I can, tell him how much I love and appreciate him all of the time like I do, and try to not worry about the other things because as he says, I am happy with things just the way they are. And he means what he says. How many of you feel guilty about not being as intimate as you used to be before TM? I live my life from a hospital bed and am in bad pain all of the time. Along with the intense pain, my abdomen feels like it is being squeezed by a python or a super-tight corset being pulled increasingly more and more tight. Plus I don't feel especially sexy with an indwelling catheter. The most Dave and I do together is watch a movie. We recently lost our 21 yr. old cat...one of our babies. Her brother was buried in the spring so we were lucky to have Sadie as long as we did. They were like our children because we couldn't have any of our own and Dave never wanted to adopt although I would have loved any child, mine or otherwise. How boring for me to go on this way. Please accept my apology but I must have needed to get it out. God's Love to you all... Jude In a message dated 11/24/2008 2:57:51 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Jude, Neuro's haven't said anything about it. I know there has been discussions on the Transverse Myelitis Association Forum and there are several people who have family members with similar illnesses. My Dad suffered from arthritis terribly and then he died as complications of Alzheimer's. My youngest sister had 'Colitis' when she was in here teens. She had her large bowel and rectum removed at age 19. She is now 58 yrs old and suffers from arthritis, can't each much anymore due to complications with intestines and had a never ever ending bladder infections. She has lived with pain almost her whole life. I call her my hero and have done so since 1972 when she had her major surgeries. She went on to marry and have two children now aged 22 and 18. She amazes me. But her health is bad. So me with TM at age 58 (it started then), my next sister now 60 has had MS diagnosed for almost 20 yrs and then my youngest sister aged 58 (who has suffered for most of her life). Autoimmune disorders all of them. I do think there is a connection with us all. Nice to see you back on-line. Hope you are doing okay right now. We met up with Patti and Jim again in October in Ontario. We were down that way for a month and they came over from the USA for 2 days. It was so good to see them again. Hugs to you Heather - Original Message - From: [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) To: [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) Sent: Monday, November 24, 2008 12:30 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 What do the neuro's say about the fact that your sister has MS and you have TM? What are the chances of that in one family? Jude In a message dated 11/24/2008 2:21:21 P.M. Eastern Standard Time, [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) writes: That is the way I understand it too Jude. My sister who is 3 yrs younger than me has MS. It is the one that progresses slowly but everytime she has and MRI she has more lesions on both spine and brain. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) To: [EMAIL PROTECTED] (mailto:[EMAIL PROTECTED]) ; [EMAIL PROTECTED] (mailto:tmic-list@eskimo.com) Sent: Monday, November 24, 2008 12:06 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Hello All, It has been my understanding that with TM one must have lesions on the spine but not on the brain. If one has lesions on the brain it is indicative of MS. Am I misinformed regarding this information? God Bless You, Jude
Re: [TMIC] Re: tmic-digest Digest V2008 #431
You, dear one, are so very special to so many of us and what comes thru on-line is just a small part of what you must give to your friends and family that can hug you and touch you. There is nothing at all wrong with that little 'pity-pottie-party'...in fact I think it is very important that we all sit down (not literally) and just cry our hearts out. Sometimes, like I always say, crying is a cleansing of our soul and that's when God is finally able to take over. We have a hard time letting go so He can, don't we? You are one of many that feel bad because we cannot share the intimacy that we once had with our husband. Jack and I have talked about it from the beginning and even tho this is getting a little personal, I talked to him about making love even tho I have no feeling and his answer was an emphatic, NO! He said it was either both of us or nothing. BUT he also said we make love in a thousand ways that has nothing to do with sex and he is so right. He also tells me he loves me just the way I am and I truly feel he means it. It breaks his heart when he sees me hurting so bad because there is nothing else that he can do for me. Yes, we are so blessed, you and I, and others whose spouse loves us so much. Do we choose to live this way, with all of the impairments and pain? No, but here we are and all we can do is the best we can do. And there you are, dear Jude, sending all of the love and encouragement to all of us with all that you are going thru yourself. Know that you are loved and we so appreciate every moment and caring words you send our way, especially when each one of us have our own 'pity-pottie-parties'. We need you all of the time but especially during those times. With love, hugs, and caring, Jeanne
Re: [TMIC] Re: tmic-digest Digest V2008 #431
I took 4 MRIs before they (the Tech) found my lesions. Thank God I had a different tech or who knows what may hahave happened - probably sent home and told to go see a physic. - Original Message - From: [EMAIL PROTECTED] To: lynne myers [EMAIL PROTECTED], tmic tmic-list@eskimo.com Sent: Monday, November 24, 2008 9:31:41 AM (GMT-0500) America/New_York Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 They were never able to locate a lesion on my spine and from what I have read on the message forums this is true for alot of people. Lynne, Perhaps you had multiple microscopic lesions F
Re: [TMIC] Re: tmic-digest Digest V2008 #431
dig with TM in Oct 04 and relapse in Apr 08 and on both MRI's was told they can not find any lesions -- Original message from CANDIS KALLEY [EMAIL PROTECTED]: -- I took 4 MRIs before they (the Tech) found my lesions. Thank God I had a different tech or who knows what may hahave happened - probably sent home and told to go see a physic. - Original Message - From: [EMAIL PROTECTED] To: "lynne myers" <[EMAIL PROTECTED]>, "tmic" <TMIC-LIST@ESKIMO.COM> Sent: Monday, November 24, 2008 9:31:41 AM (GMT-0500) America/New_York Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431They were never able to locate a lesion on my spine and from what I have read on the message forums this is true for alot of people. Lynne, Perhaps you had multiple microscopic lesions F
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Jude honey we always want to hear about you!!! You are such a part of this group. We want to hear about your good days and your bad days. We love you! Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED]; TMIC-LIST@eskimo.com Sent: Monday, November 24, 2008 4:14:34 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 AOL Email I just got off of the phone with Patti and she seems to be doing quite well. I guess I have not been posting as much as I thought, because she mentioned not hearing from me too. Sorry everyone. I guess that I am having a minor pity party and don't feel like other people care to hear about my woes when they have troubles of their own. I can't imagine having TM the way I do and trying to raise a family at the same time. Those of you with children have a blessing and a burden at the same time. And I mean that in the most loving way. If Dave and I had children, with me being paralyzed, our children would be sorely lacking in so many ways. Dave would have made a wonderful father, so patient and kind, but I don't know what I could have contributed. I feel terribly guilty because I don't give Dave all of the loving appreciation he deserves as my husband. But most of the time I am in too much pain to feel like being intimate. Am I wrong? Should I try harder? Should I try to hide the pain and force myself? Or, should I continue to smile when I can, tell him how much I love and appreciate him all of the time like I do, and try to not worry about the other things because as he says, I am happy with things just the way they are. And he means what he says. How many of you feel guilty about not being as intimate as you used to be before TM? I live my life from a hospital bed and am in bad pain all of the time. Along with the intense pain, my abdomen feels like it is being squeezed by a python or a super-tight corset being pulled increasingly more and more tight. Plus I don't feel especially sexy with an indwelling catheter. The most Dave and I do together is watch a movie. We recently lost our 21 yr. old cat...one of our babies. Her brother was buried in the spring so we were lucky to have Sadie as long as we did. They were like our children because we couldn't have any of our own and Dave never wanted to adopt although I would have loved any child, mine or otherwise. How boring for me to go on this way. Please accept my apology but I must have needed to get it out. God's Love to you all... Jude In a message dated 11/24/2008 2:57:51 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Jude, Neuro's haven't said anything about it. I know there has been discussions on the Transverse Myelitis Association Forum and there are several people who have family members with similar illnesses. My Dad suffered from arthritis terribly and then he died as complications of Alzheimer's. My youngest sister had 'Colitis' when she was in here teens. She had her large bowel and rectum removed at age 19. She is now 58 yrs old and suffers from arthritis, can't each much anymore due to complications with intestines and had a never ever ending bladder infections. She has lived with pain almost her whole life. I call her my hero and have done so since 1972 when she had her major surgeries. She went on to marry and have two children now aged 22 and 18. She amazes me. But her health is bad. So me with TM at age 58 (it started then), my next sister now 60 has had MS diagnosed for almost 20 yrs and then my youngest sister aged 58 (who has suffered for most of her life). Autoimmune disorders all of them. I do think there is a connection with us all. Nice to see you back on-line. Hope you are doing okay right now. We met up with Patti and Jim again in October in Ontario. We were down that way for a month and they came over from the USA for 2 days. It was so good to see them again. Hugs to you Heather - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Monday, November 24, 2008 12:30 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 What do the neuro's say about the fact that your sister has MS and you have TM? What are the chances of that in one family? Jude In a message dated 11/24/2008 2:21:21 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: That is the way I understand it too Jude. My sister who is 3 yrs younger than me has MS. It is the one that progresses slowly but everytime she has and MRI she has more lesions on both spine and brain. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, November 24, 2008 12:06 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Hello All, It has been my understanding that with TM one must have lesions
Re: [TMIC] Re: tmic-digest Digest V2008 #431
It is complicated. But I have 3 lesions on my spine. And damage to my optic nerve. So since the damage to the optic nerve was first, before the first problems showed up in the spine, it is call Divic's version of MS. I hope this makes some kind of since. But the weird thing to me is so many of you my friends have no lesions, just inflammation and can not walk and here I am with 3 lesions and can still walk??? Jenna From: Pieter and Heather [EMAIL PROTECTED] To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Monday, November 24, 2008 2:20:58 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 AOL Email That is the way I understand it too Jude. My sister who is 3 yrs younger than me has MS. It is the one that progresses slowly but everytime she has and MRI she has more lesions on both spine and brain. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Monday, November 24, 2008 12:06 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Hello All, It has been my understanding that with TM one must have lesions on the spine but not on the brain. If one has lesions on the brain it is indicative of MS. Am I misinformed regarding this information? God Bless You, Jude In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Frank, They were never able to locate a lesion on my spine and from what I have read on the message forums this is true for alot of people. I had mutiple MRIs done both with and without contrast. Lynne --- On Sun, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC tmic-list@eskimo.com Date: Sunday, November 23, 2008, 4:30 PM i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? What does swelling from c6-t3 and t9-t10 mean?? Did you have an MRI with and with out gadolium (enhansement)? F One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!
Re: [TMIC] Re: tmic-digest Digest V2008 #431
I have damage to the optic nerve and 3 lesions on the spine, and have been told it is Divic's as part of MS. But no problems with the brain so far. Honey who knows for sure??? Jenna From: [EMAIL PROTECTED] [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Monday, November 24, 2008 2:06:37 PM Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 AOL Email Hello All, It has been my understanding that with TM one must have lesions on the spine but not on the brain. If one has lesions on the brain it is indicative of MS. Am I misinformed regarding this information? God Bless You, Jude In a message dated 11/24/2008 8:34:00 A.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Frank, They were never able to locate a lesion on my spine and from what I have read on the message forums this is true for alot of people. I had mutiple MRIs done both with and without contrast. Lynne --- On Sun, 11/23/08, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: From: [EMAIL PROTECTED] [EMAIL PROTECTED] Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 To: jrushton [EMAIL PROTECTED], [EMAIL PROTECTED], TMIC tmic-list@eskimo.com Date: Sunday, November 23, 2008, 4:30 PM i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? What does swelling from c6-t3 and t9-t10 mean?? Did you have an MRI with and with out gadolium (enhansement)? F One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!
Re: [TMIC] Re: tmic-digest Digest V2008 #431
In response to: i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? will the swelling go down? will i be able to recover? i am a single mother of two and i really want to be able to take care of myself and my babies. i keep thinking i am not trying hard enough. i am wheelchair bound, and it seems recovery is happening but very slow. got diagnosed aug. 11th of this year and was told i would see most of recovery from 3-6 months. i feel like i am on some deadline and my time to get better will be up soon. i am scared and i am not sure what to do. any advice? thanks Amanda in Calhoun, gad Amanda, dear, you have legitimate questions that really need to be discussed with a neurologist. Do you have one that you can go see and have a heart to heart talk with? They usually will be able to give you more time than your regular provider who is so limited on how long they can spend with patients anymore. Your comment on not trying hard enough is being too hard on yourself. Treat yourself through all of this just like you would one of your children. Be kinder to yourself if you can. This TM is not something that a whole lot of people know much about and is a rare occurrence so there aren't a lot of answers when it comes to recovery time and the extent of how fast or even how far your recovery will go. Try to keep your spirit up as much as you can, don't give up and sometimes it will be very hard especially when you have the worries of your two children. There are no deadlines with TM. No two of us with TM are the same. I can't tell you not to be scared because not knowing can make any of us scared, especially when you are going thru something like you are right now. Do you have any help for yourself? For your children? Family or friends? Did they help you before you left the hospital to make sure you had everything you needed upon your return home? You have come to a good place by being on this site and you will learn a lot by reading the notes even if you don't write back. I sure hope you do because we would like to know how you are doing and what kind of help you are getting. Please take care! Jeanne in Dayton
Re: [TMIC] Re: tmic-digest Digest V2008 #431
i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? What does swelling from c6-t3 and t9-t10 mean?? Did you have an MRI with and with out gadolium (enhansement)? F
RE: [TMIC] Re: tmic-digest Digest V2008 #431
Hi Jeanne - congrats on your progress! - it is also my goal to walk without walker. I hope I can but I was diagnosed with MS after TM. My neuro wants me to go for an evaluation for walk aide - a gadget you strap to your calf to jolt you when you are trying to take a step, and also a new med coming out next year - we'll see. First I have to get off my butt exercise more but in the evening I am too pooped from working all day can't do it in the morning because then I'll be too pooped at work! Barney From: jrushton [mailto:[EMAIL PROTECTED] Sent: Thursday, November 20, 2008 7:32 PM To: [EMAIL PROTECTED]; tmic Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Amanda, you couldn't have come to a better group. We go clear across the chart in where we are in our post TM onset so you will have a lot of support. I don't think anyone really knows where each person will be with their TM. Some do improve right away, some improve partially from the onset, others take longer and then sadly, a few where there aren't many changes from the onset. I was totally paralyzed from the chest down and after the first week was able to move my left toe. After three weeks, I was able to sit up and move my legs but still could not walk but was determined to get better. With prayer and PT I progressed from a wheelchair full time, to a walker and wheelchair, to a wheelchair with shopping and traveling, and now can walk, drive, and get around pretty darn well from where I started. I walk like a drunk and always take a cane if I'm going anywhere but by gosh, I can do it!!! I still don't have the feeling back from the chest down even tho I have sensation here and there. There are others who have come a whole lot further than I have. Each case is different. Please take care and although I wish this hadn't happened to you, you are welcome as sunshine to this new family of supporters! Jeanne in Dayton, WA
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Hi Bernie, Rosalie here, now in sunny Florida. Just went for an evaluation with the bioness system (walk aid). It is used for drop foot and helps to lift your ankle up so you dont drag on the floor. Didn't work for me. However my foot doesnt really drag so much. I thought it might help with the walking but it is only for your ankle. I spend most of my time in the power chair anyhow because if I walk with the walker I cant stand on my own when I get to where I am going, like the kitchen. Hope you are as well as can be and not feeling too much of the cold on Long Island. Take care, Rosalie In a message dated 11/21/2008 8:22:48 A.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Hi Jeanne - congrats on your progress! - it is also my goal to walk without walker. I hope I can but I was diagnosed with MS after TM. My neuro wants me to go for an evaluation for walk aide - a gadget you strap to your calf to jolt you when you are trying to take a step, and also a new med coming out next year - we'll see. First I have to get off my butt exercise more but in the evening I am too pooped from working all day can't do it in the morning because then I'll be too pooped at work! Barney From: jrushton [mailto:[EMAIL PROTECTED] Sent: Thursday, November 20, 2008 7:32 PM To: [EMAIL PROTECTED]; tmic Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Amanda, you couldn't have come to a better group. We go clear across the chart in where we are in our post TM onset so you will have a lot of support. I don't think anyone really knows where each person will be with their TM. Some do improve right away, some improve partially from the onset, others take longer and then sadly, a few where there aren't many changes from the onset. I was totally paralyzed from the chest down and after the first week was able to move my left toe. After three weeks, I was able to sit up and move my legs but still could not walk but was determined to get better. With prayer and PT I progressed from a wheelchair full time, to a walker and wheelchair, to a wheelchair with shopping and traveling, and now can walk, drive, and get around pretty darn well from where I started. I walk like a drunk and always take a cane if I'm going anywhere but by gosh, I can do it!!! I still don't have the feeling back from the chest down even tho I have sensation here and there. There are others who have come a whole lot further than I have. Each case is different. Please take care and although I wish this hadn't happened to you, you are welcome as sunshine to this new family of supporters! Jeanne in Dayton, WA **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001)
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Hi, friend! I tried that walk aide out and the concept is really good but it was just too expensive ($4,000) and our ins. wouldn't cover it. Trying it out I could see how it did work and that was from setting the timing of the elec. jolt into the muscle that makes you able to take a real step. The jolt was surprising at first but not that bad especially knowing and seeing how it could help you not drag your foot. Good luck on that! I'll be anxious to hear how it works out for you!!! I admire the fact that you are working! I tried but just couldn't do it. I just plain didn't have the stamina to do a good job. The clinic was so wonderful and would have let me continue but it wasn't fair to them or the staff. It was the right decision to retire. Please take care!! Jeanne
RE: [TMIC] Re: tmic-digest Digest V2008 #431
My neuro said that my insurance (United Health Care) does cover it, we'll see how much. Yes, I am working, for Honeywell. They have even set me up to work from home a couple of days per week - especially good when the nasty weather hits. Stamina is a real problem for me, I poop out after lunch usually, I gotta push it. In the evenings I just flop. Barney From: jrushton [mailto:[EMAIL PROTECTED] Sent: Friday, November 21, 2008 10:41 AM To: Butcher, Bernard G (NY80); tmic Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Hi, friend! I tried that walk aide out and the concept is really good but it was just too expensive ($4,000) and our ins. wouldn't cover it. Trying it out I could see how it did work and that was from setting the timing of the elec. jolt into the muscle that makes you able to take a real step. The jolt was surprising at first but not that bad especially knowing and seeing how it could help you not drag your foot. Good luck on that! I'll be anxious to hear how it works out for you!!! I admire the fact that you are working! I tried but just couldn't do it. I just plain didn't have the stamina to do a good job. The clinic was so wonderful and would have let me continue but it wasn't fair to them or the staff. It was the right decision to retire. Please take care!! Jeanne
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Barney, I'm using the WalkAide since mid May. I'm in a 3 (three) year Clinical Trial here in Alberta. Not everyone is able to use it depending on if they can find the pathway for the Peroneal nerve. I was one of 3 out of 13 people they had tested when I first got it. Out of the 13 at the clinic at that time only 3 of us turned out to be eligible. There are probably more now. It took a while for me to get used to it. At first it stabbed me like a darning needle. But eventually they found the right spot and it feels like a river of sensation going from the point that electrode contacts the nerve down my leg to my toes. It lifts my toes. The biggest advantage I have found is that I do not 'hip-hike' like I did and my leg is much less tired by the end of the day. I know that in the Orthotist Clinic that I go to they had 2 people with MS, 2 stroke patients and 2 people with TM at one point. Worth a try especially if it is covered by your insurance or something else. I know that I only had to pay $500. but the price would be about $4500. if I had to pay for it myself. When I was 'hip-hiking' so much I found I was getting a cortisone shot in my hip every 6 months to alleviate the pain. Heather in Calgary - Original Message - From: Butcher, Bernard G (NY80) To: jrushton ; [EMAIL PROTECTED] ; tmic Sent: Friday, November 21, 2008 6:22 AM Subject: RE: [TMIC] Re: tmic-digest Digest V2008 #431 Hi Jeanne - congrats on your progress! - it is also my goal to walk without walker. I hope I can but I was diagnosed with MS after TM. My neuro wants me to go for an evaluation for walk aide - a gadget you strap to your calf to jolt you when you are trying to take a step, and also a new med coming out next year - we'll see. First I have to get off my butt exercise more but in the evening I am too pooped from working all day can't do it in the morning because then I'll be too pooped at work! Barney -- From: jrushton [mailto:[EMAIL PROTECTED] Sent: Thursday, November 20, 2008 7:32 PM To: [EMAIL PROTECTED]; tmic Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Amanda, you couldn't have come to a better group. We go clear across the chart in where we are in our post TM onset so you will have a lot of support. I don't think anyone really knows where each person will be with their TM. Some do improve right away, some improve partially from the onset, others take longer and then sadly, a few where there aren't many changes from the onset. I was totally paralyzed from the chest down and after the first week was able to move my left toe. After three weeks, I was able to sit up and move my legs but still could not walk but was determined to get better. With prayer and PT I progressed from a wheelchair full time, to a walker and wheelchair, to a wheelchair with shopping and traveling, and now can walk, drive, and get around pretty darn well from where I started. I walk like a drunk and always take a cane if I'm going anywhere but by gosh, I can do it!!! I still don't have the feeling back from the chest down even tho I have sensation here and there. There are others who have come a whole lot further than I have. Each case is different. Please take care and although I wish this hadn't happened to you, you are welcome as sunshine to this new family of supporters! Jeanne in Dayton, WA
RE: [TMIC] Re: tmic-digest Digest V2008 #431
Thanks Heather - I'll try it. I'll try anything! Barney From: Pieter and Heather [mailto:[EMAIL PROTECTED] Sent: Friday, November 21, 2008 1:53 PM To: Butcher, Bernard G (NY80); jrushton; [EMAIL PROTECTED]; tmic Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Barney, I'm using the WalkAide since mid May. I'm in a 3 (three) year Clinical Trial here in Alberta. Not everyone is able to use it depending on if they can find the pathway for the Peroneal nerve. I was one of 3 out of 13 people they had tested when I first got it. Out of the 13 at the clinic at that time only 3 of us turned out to be eligible. There are probably more now. It took a while for me to get used to it. At first it stabbed me like a darning needle. But eventually they found the right spot and it feels like a river of sensation going from the point that electrode contacts the nerve down my leg to my toes. It lifts my toes. The biggest advantage I have found is that I do not 'hip-hike' like I did and my leg is much less tired by the end of the day. I know that in the Orthotist Clinic that I go to they had 2 people with MS, 2 stroke patients and 2 people with TM at one point. Worth a try especially if it is covered by your insurance or something else. I know that I only had to pay $500. but the price would be about $4500. if I had to pay for it myself. When I was 'hip-hiking' so much I found I was getting a cortisone shot in my hip every 6 months to alleviate the pain. Heather in Calgary - Original Message - From: Butcher, Bernard G (NY80) mailto:[EMAIL PROTECTED] To: jrushton mailto:[EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic mailto:tmic-list@eskimo.com Sent: Friday, November 21, 2008 6:22 AM Subject: RE: [TMIC] Re: tmic-digest Digest V2008 #431 Hi Jeanne - congrats on your progress! - it is also my goal to walk without walker. I hope I can but I was diagnosed with MS after TM. My neuro wants me to go for an evaluation for walk aide - a gadget you strap to your calf to jolt you when you are trying to take a step, and also a new med coming out next year - we'll see. First I have to get off my butt exercise more but in the evening I am too pooped from working all day can't do it in the morning because then I'll be too pooped at work! Barney From: jrushton [mailto:[EMAIL PROTECTED] Sent: Thursday, November 20, 2008 7:32 PM To: [EMAIL PROTECTED]; tmic Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Amanda, you couldn't have come to a better group. We go clear across the chart in where we are in our post TM onset so you will have a lot of support. I don't think anyone really knows where each person will be with their TM. Some do improve right away, some improve partially from the onset, others take longer and then sadly, a few where there aren't many changes from the onset. I was totally paralyzed from the chest down and after the first week was able to move my left toe. After three weeks, I was able to sit up and move my legs but still could not walk but was determined to get better. With prayer and PT I progressed from a wheelchair full time, to a walker and wheelchair, to a wheelchair with shopping and traveling, and now can walk, drive, and get around pretty darn well from where I started. I walk like a drunk and always take a cane if I'm going anywhere but by gosh, I can do it!!! I still don't have the feeling back from the chest down even tho I have sensation here and there. There are others who have come a whole lot further than I have. Each case is different. Please take care and although I wish this hadn't happened to you, you are welcome as sunshine to this new family of supporters! Jeanne in Dayton, WA
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Bernie, Here is the website that my Physiatrist had me check out before I told him yes or no if I was even interested in being tested. This is the one I have now. http://www.walkaide.com/ Heather in Calgary - Original Message - From: Butcher, Bernard G (NY80) To: Pieter and Heather ; jrushton ; [EMAIL PROTECTED] ; tmic Sent: Friday, November 21, 2008 12:37 PM Subject: RE: [TMIC] Re: tmic-digest Digest V2008 #431 Thanks Heather - I'll try it. I'll try anything! Barney -- From: Pieter and Heather [mailto:[EMAIL PROTECTED] Sent: Friday, November 21, 2008 1:53 PM To: Butcher, Bernard G (NY80); jrushton; [EMAIL PROTECTED]; tmic Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Barney, I'm using the WalkAide since mid May. I'm in a 3 (three) year Clinical Trial here in Alberta. Not everyone is able to use it depending on if they can find the pathway for the Peroneal nerve. I was one of 3 out of 13 people they had tested when I first got it. Out of the 13 at the clinic at that time only 3 of us turned out to be eligible. There are probably more now. It took a while for me to get used to it. At first it stabbed me like a darning needle. But eventually they found the right spot and it feels like a river of sensation going from the point that electrode contacts the nerve down my leg to my toes. It lifts my toes. The biggest advantage I have found is that I do not 'hip-hike' like I did and my leg is much less tired by the end of the day. I know that in the Orthotist Clinic that I go to they had 2 people with MS, 2 stroke patients and 2 people with TM at one point. Worth a try especially if it is covered by your insurance or something else. I know that I only had to pay $500. but the price would be about $4500. if I had to pay for it myself. When I was 'hip-hiking' so much I found I was getting a cortisone shot in my hip every 6 months to alleviate the pain. Heather in Calgary - Original Message - From: Butcher, Bernard G (NY80) To: jrushton ; [EMAIL PROTECTED] ; tmic Sent: Friday, November 21, 2008 6:22 AM Subject: RE: [TMIC] Re: tmic-digest Digest V2008 #431 Hi Jeanne - congrats on your progress! - it is also my goal to walk without walker. I hope I can but I was diagnosed with MS after TM. My neuro wants me to go for an evaluation for walk aide - a gadget you strap to your calf to jolt you when you are trying to take a step, and also a new med coming out next year - we'll see. First I have to get off my butt exercise more but in the evening I am too pooped from working all day can't do it in the morning because then I'll be too pooped at work! Barney From: jrushton [mailto:[EMAIL PROTECTED] Sent: Thursday, November 20, 2008 7:32 PM To: [EMAIL PROTECTED]; tmic Subject: Re: [TMIC] Re: tmic-digest Digest V2008 #431 Amanda, you couldn't have come to a better group. We go clear across the chart in where we are in our post TM onset so you will have a lot of support. I don't think anyone really knows where each person will be with their TM. Some do improve right away, some improve partially from the onset, others take longer and then sadly, a few where there aren't many changes from the onset. I was totally paralyzed from the chest down and after the first week was able to move my left toe. After three weeks, I was able to sit up and move my legs but still could not walk but was determined to get better. With prayer and PT I progressed from a wheelchair full time, to a walker and wheelchair, to a wheelchair with shopping and traveling, and now can walk, drive, and get around pretty darn well from where I started. I walk like a drunk and always take a cane if I'm going anywhere but by gosh, I can do it!!! I still don't have the feeling back from the chest down even tho I have sensation here and there. There are others who have come a whole lot further than I have. Each case is different. Please take care and although I wish this hadn't happened to you, you are welcome as sunshine to this new family of supporters! Jeanne in Dayton, WA
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Amanda, I also don't have lesions on my spine but was told I had swelling. You'd think that when the swelling went down. everything would go back to normal, but, though I did gain back a great deal, I didn't have full recovery. In an informal survey several years ago that the TMA did, about a third of the respondents had no lesions. Don't believe in deadlines!! Many have experienced improvement even years after TM. For me the most improvement came within the first several months, but more did come. And it does come verrry slowly. I can remember each week thinking not much was happening, but then when I would look back over several weeks or months I could see significant gains. Are you having physical therapy? That (next to prayer) was the biggest help to me. It is hard to balance pushing yourself yet not overdoing it. Is Calhoun anywhere near Douglasville? I lived in Douglasville when I first encountered TM, diagnosed By Dr. Richard Bashuk at what was then Cobb Hospital. There is a support group that meets regularly in Douglasville now -- unfortunately I didn't know anyone else there with TM when I was there, but they send notices here when they meet. Best wishes for as much recover as possible, Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 11/20/2008 2:19:47 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? will the swelling go down? will i be able to recover? i am a single mother of two and i really want to be able to take care of myself and my babies. i keep thinking i am not trying hard enough. i am wheelchair bound, and it seems recovery is happening but very slow. got diagnosed aug. 11th of this year and was told i would see most of recovery from 3-6 months. i feel like i am on some deadline and my time to get better will be up soon. i am scared and i am not sure what to do. any advice? thanks amanda in calhoun, ga **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/10075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom0001)
Re: [TMIC] Re: tmic-digest Digest V2008 #431
I am in Carrollton and part of the "Douglasville TM" group, we had a meeting last Sunday and trying to figure of a date for December. I will send you a seperate email with our addresses -- Original message from [EMAIL PROTECTED]: -- Amanda, I also don't have lesions on my spine but was told I had swelling. You'd think that when the swelling went down. everything would go back to normal, but, though I did gain back a great deal, I didn't have full recovery. In an informal survey several years ago that the TMA did, about a third of the respondents had no lesions. Don't believe in deadlines!! Many have experienced improvement even years after TM. For me the most improvement came within the first several months, but more did come. And it does come verrry slowly. I can remember each week thinking not much was happening, but then when I would look back over several weeks or months I could see significant gains. Are you having physical therapy? That (next to prayer) was the biggest help to me. It is hard to balance pushing yourself yet not overdoing it. Is Calhoun anywhere near Douglasville? I lived in Douglasville when I first encountered TM, diagnosed By Dr. Richard Bashuk at what was then Cobb Hospital.There is a support group that meets regularly in Douglasville now -- unfortunately I didn't know anyone else there with TM when I was there, but they send notices here when they meet. Best wishes for as much recover as possible, Barbara H. http://barbarah.wordpress.com/ In a message dated 11/20/2008 2:19:47 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: i have a question, has anyone else been told that they don't have lesions on their spine? my neuro says mine is just swelling from c6-t3 and t9-t10., so what does that mean? will the swelling go down? will i be able to recover? i am a single mother of two and i really want to be able to take care of myself and my babies. i keep thinking i am not trying hard enough. i am wheelchair bound, and it seems recovery is happening but very slow. got diagnosed aug. 11th of this year and was told i would see most of recovery from 3-6 months. i feel like i am on some deadline and my time to get better will be up soon. i am scared and i am not sure what to do. any advice? thanks amanda in calhoun, ga One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!
Re: [TMIC] Re: tmic-digest Digest V2008 #431
Amanda, you couldn't have come to a better group. We go clear across the chart in where we are in our post TM onset so you will have a lot of support. I don't think anyone really knows where each person will be with their TM. Some do improve right away, some improve partially from the onset, others take longer and then sadly, a few where there aren't many changes from the onset. I was totally paralyzed from the chest down and after the first week was able to move my left toe. After three weeks, I was able to sit up and move my legs but still could not walk but was determined to get better. With prayer and PT I progressed from a wheelchair full time, to a walker and wheelchair, to a wheelchair with shopping and traveling, and now can walk, drive, and get around pretty darn well from where I started. I walk like a drunk and always take a cane if I'm going anywhere but by gosh, I can do it!!! I still don't have the feeling back from the chest down even tho I have sensation here and there. There are others who have come a whole lot further than I have. Each case is different. Please take care and although I wish this hadn't happened to you, you are welcome as sunshine to this new family of supporters! Jeanne in Dayton, WA
