Re: [TMIC] TM and Pilates
Okay, I think I want some recipe's for BBQ'ing. Janice From: bobby jim Sent: Sunday, February 14, 2010 8:01 PM To: Janice Nichols ; Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates We here also like to grill out as offen as we can.It's fun..(methinx). We'll grill more than meats, veggies such as corn wrapped in foil with basil leaves(fresh) wrapped around them, mixed veggies also wrapped in foil come out quite tasty as well. Bon appetit, BobbyJim From: Janice Nichols To: Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 11:41 Subject: Re: [TMIC] TM and Pilates Several have mentioned the difficulty in fixing a meal.Boy, did I dread that.I have gotten better at it by doing parts of it at different times of the day.I was trying to do it all at once, but really paid a price for it.Now is much easier by planning meals like casseroles, crock pot, etc., where I don't have to stand very long.What I really like is when it is warmer my husband grills and I only have to fix a couple of side dishes. In Missouri, that is in April - but we grill until the end of October. Janice From: Patricia Cooley Sent: Sunday, February 14, 2010 10:43 AM To: 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: RE: [TMIC] TM and Pilates Barb - my lesion is also at T-10 according to my neuro. On my last MRI, he said the nerves have healed and are not swollen, but the protective coating has been destroyed and that is was causing the problems. He also confirms the TM diagnosis. I am able to walk in the house without any aids, but I cannot stand alone for anymore than a few seconds. When I am moving I am o.k. but when I stop I have to have something to hold on to. My family said I waddle like a duck when walking but at least I can get where I want to go. I used to use the walker with a wheels and a seat while cooking, but I don't have to do that anymore. I am pooped after. I also use a walker when I am out and about. I need the security of having something to hold on it. I also have an electric cart so I can get around to various functions, but don't use it much during the winter. I use it when going to things like the State Fair, etc. It is always so nice when we can compare symptoms and problems. It shows we are not alone in this. Take care and don't give up! Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 6:20 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry -- From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who
Re: [TMIC] TM and Pilates
Avonex - new to me.What is it supposed to do? Janice From: bobby jim Sent: Sunday, February 14, 2010 8:25 PM To: Janice Nichols ; rj_ran...@yahoo.com ; tmic-list@eskimo.com ; Barbara Alma Subject: Re: [TMIC] TM and Pilates Improvement. me thinx she's at the stage where improvement would be the regeneration of her myelin, a feat not yet at hand. She's fully mobile, sleeps well, works an eight-hour day and loves to cook. She also likes gardening but I take care of the harder chores because after a couple of hours out in the garden, specially in the summer, she starts to fade a bit. All this, am sure, is because she's been on Avonex since March '99. BobbyJim From: Janice NicholsTo: bobby jim ; rj_ran...@yahoo.com ; tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, February 14, 2010 18:26 Subject: Re: [TMIC] TM and Pilates She really had it rough.Hope, eventually, she will improve.We hear from others that after many years, improvement still happens.I wish her luck. Janice From: bobby jim Sent: Sunday, February 14, 2010 5:33 PM To: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com ; Barbara Alma Subject: Re: [TMIC] TM and Pilates Well, me missus went from an initial TM dx to an MS dx after her second attack. Today, 12 years later, she still has the same lingering effects. A 'sore' back at T-8, chronic fatigue and a dislike for extreme heat and cold. BobbyJim From: Barbara AlmaTo: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 16:50 Subject: Re: [TMIC] TM and Pilates I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me
Re: [TMIC] TM and Pilates
*Avonex is interferon beta-1a, one of the CRAB drugs that is used for MS.*
Re: [TMIC] TM and Pilates
Do you mean recipes for the sauce..???Memphis has a great assortment of sauces and powders. We almost never make our own. I'll send you some web sites. BobbyJim From: Janice Nichols To: bobby jim ; Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Monday, February 15, 2010 3:03Subject: Re: [TMIC] TM and Pilates Okay, I think I want some recipe's for BBQ'ing. Janice From: bobby jim Sent: Sunday, February 14, 2010 8:01 PM To: Janice Nichols ; Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates We here also like to grill out as offen as we can.It's fun..(methinx). We'll grill more than meats, veggies such as corn wrapped in foil with basil leaves(fresh) wrapped around them, mixed veggies also wrapped in foil come out quite tasty as well. Bon appetit, BobbyJim From: Janice Nichols To: Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 11:41 Subject: Re: [TMIC] TM and Pilates Several have mentioned the difficulty in fixing a meal.Boy, did I dread that.I have gotten better at it by doing parts of it at different times of the day.I was trying to do it all at once, but really paid a price for it.Now is much easier by planning meals like casseroles, crock pot, etc., where I don't have to stand very long.What I really like is when it is warmer my husband grills and I only have to fix a couple of side dishes. In Missouri, that is in April - but we grill until the end of October. Janice From: Patricia Cooley Sent: Sunday, February 14, 2010 10:43 AM To: 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: RE: [TMIC] TM and Pilates Barb - my lesion is also at T-10 according to my neuro. On my last MRI, he said the nerves have healed and are not swollen, but the protective coating has been destroyed and that is was causing the problems. He also confirms the TM diagnosis. I am able to walk in the house without any aids, but I cannot stand alone for anymore than a few seconds. When I am moving I am o.k. but when I stop I have to have something to hold on to. My family said I waddle like a duck when walking but at least I can get where I want to go. I used to use the walker with a wheels and a seat while cooking, but I don't have to do that anymore. I am pooped after. I also use a walker when I am out and about. I need the security of having something to hold on it. I also have an electric cart so I can get around to various functions, but don't use it much during the winter. I use it when going to things like the State Fair, etc. It is always so nice when we can compare symptoms and problems. It shows we are not alone in this. Take care and don't give up! Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 6:20 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always
RE: [TMIC] TM and Pilates
I also do not have a legion on my spinal cord at this time and Dr. Kerr was my neurologist and he told me that I definitely have TM and that does not matter. It is not always present in an MRI. I believe him. I have TM. From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 12:40 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most unbelievable facial pain. Had several doc all with different ideas and one that got me on my feet and another that got me in pt and walking again I've been hospitalized 4 times and now suddenly I am told that I don't have ms and show no signs of tm. I pray to God nothing comes back. I spent an entire summer pushing myself on a tread mill trying to rebuild my strenght but that was after the years of trying to cross my legs and do odd excercises on the bed floor and chair that the pt taught me. It sure has been a mentally brain warping experience. Tx grace for calling me fam. This is a great group of people and have helped me get through a lot of challenges as well as put up with my venting from time to time. I think we all have to vent. --Original Message-- From: Grace M. To: rj_ran...@yahoo.com Cc: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:26 PM Randy, You're like family here at the site and have a lot of good input to offer. I think that you and I came around the same time. Janice, we don't have to currently be ill in order to participate here. ALL are welcome. It's not an exclusive club. Respectfully, Grace Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very wkward these days. I've been told more than once that I had all the textbook igns for ms and I did loose my left foot followed by my right leg then my ladder was told I had tm and went through the most unbelievable facial pain. ad several doc all with different ideas and one that got me on my feet and nother that got me in pt and walking again I've been hospitalized 4 times and ow suddenly I am told that I don't have ms and show no signs of tm. I pray to od nothing comes back. I spent an entire summer pushing myself on a tread mill rying to rebuild my strenght but that was after the years of trying to cross my egs and do odd excercises on the bed floor and chair that the pt taught me. It ure has been a mentally brain warping experience. Tx grace for calling me fam. his is a great group of people and have helped me get through a lot of hallenges as well as put up with my venting from time to time. I think we all ave to vent. -Original Message-- rom: Grace M. o: rj_ran...@yahoo.com c: Janice Nichols c: tmic-list@eskimo.com ubject: Re: [TMIC] TM
Re: [TMIC] TM and Pilates
--- On Sun, 2/14/10, lynne myers lynnemye...@yahoo.com wrote: From: lynne myers lynnemye...@yahoo.com Subject: Re: [TMIC] TM and Pilates To: rj_ran...@yahoo.com Date: Sunday, February 14, 2010, 8:16 AM I think what your neuro was telling you was that TM is part of a group of diesases that are autoimmune disorders. These include diabetes, lupus and arthrits to name a few. They are caused when the bodys immune system attacks it for some reason. Lynne --- On Sun, 2/14/10, rj_ran...@yahoo.com rj_ran...@yahoo.com wrote: From: rj_ran...@yahoo.com rj_ran...@yahoo.com Subject: Re: [TMIC] TM and Pilates To: Barbara Alma balmat...@aol.com, tmic-list@eskimo.com Date: Sunday, February 14, 2010, 12:51 AM Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry
RE: [TMIC] TM and Pilates
Barb - my lesion is also at T-10 according to my neuro. On my last MRI, he said the nerves have healed and are not swollen, but the protective coating has been destroyed and that is was causing the problems. He also confirms the TM diagnosis. I am able to walk in the house without any aids, but I cannot stand alone for anymore than a few seconds. When I am moving I am o.k. but when I stop I have to have something to hold on to. My family said I waddle like a duck when walking but at least I can get where I want to go. I used to use the walker with a wheels and a seat while cooking, but I don't have to do that anymore. I am pooped after. I also use a walker when I am out and about. I need the security of having something to hold on it. I also have an electric cart so I can get around to various functions, but don't use it much during the winter. I use it when going to things like the State Fair, etc. It is always so nice when we can compare symptoms and problems. It shows we are not alone in this. Take care and don't give up! Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 6:20 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry _ From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic
Re: [TMIC] TM and Pilates
Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most unbelievable facial pain. Had several doc all with different ideas and one that got me on my feet and another that got me in pt and walking again I've been hospitalized 4 times and now suddenly I am told that I don't have ms and show no signs of tm. I pray to God nothing comes back. I spent an entire summer pushing myself on a tread mill trying to rebuild my strenght but that was after the years of trying to cross my legs and do odd excercises on the bed floor and chair that the pt taught me. It sure has been a mentally brain warping experience. Tx grace for calling me fam. This is a great group of people and have helped me get through a lot of challenges as well as put up with my venting from time to time. I think we all have to vent. --Original Message-- From: Grace M. To: rj_ran...@yahoo.com Cc: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:26 PM Randy, You're like family here at the site and have a lot of good input to offer. I think that you and I came around the same time. Janice, we don't have to currently be ill in order to participate here. ALL are welcome. It's not an exclusive club. Respectfully, Grace Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
*Hi Janice, * *One has to remember that the term Transverse Myelitis, means exactly that. Transverse: Across or crosswise. Myelitis: inflammation of the spinal cord. Inflammation of the cord can be caused by several different disease processes, but it can also be idiopathic, meaning that there is no known cause. Just because there is an underlying disease process does not negate the fact that the patient has indeed suffered a Transverse Myelitis attack. There are TM patients here with NMO (Myself, with relapsing LETM), Sjogrens ( Linda C. with relapsing TM) MS, those who have experienced ADEM, and other processes. There are also many patients who have experienced *idiopathic* TM, meaning that there is no known cause. * *Gracie* * * * *
Re: [TMIC] TM and Pilates
Several have mentioned the difficulty in fixing a meal.Boy, did I dread that.I have gotten better at it by doing parts of it at different times of the day.I was trying to do it all at once, but really paid a price for it.Now is much easier by planning meals like casseroles, crock pot, etc., where I don't have to stand very long.What I really like is when it is warmer my husband grills and I only have to fix a couple of side dishes. In Missouri, that is in April - but we grill until the end of October. Janice From: Patricia Cooley Sent: Sunday, February 14, 2010 10:43 AM To: 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: RE: [TMIC] TM and Pilates Barb - my lesion is also at T-10 according to my neuro. On my last MRI, he said the nerves have healed and are not swollen, but the protective coating has been destroyed and that is was causing the problems. He also confirms the TM diagnosis. I am able to walk in the house without any aids, but I cannot stand alone for anymore than a few seconds. When I am moving I am o.k. but when I stop I have to have something to hold on to. My family said I waddle like a duck when walking but at least I can get where I want to go. I used to use the walker with a wheels and a seat while cooking, but I don't have to do that anymore. I am pooped after. I also use a walker when I am out and about. I need the security of having something to hold on it. I also have an electric cart so I can get around to various functions, but don't use it much during the winter. I use it when going to things like the State Fair, etc. It is always so nice when we can compare symptoms and problems. It shows we are not alone in this. Take care and don't give up! Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 6:20 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't
Re: [TMIC] TM and Pilates
That's me - Idiopathic. Doctors went nuts trying to come up with a reason for the TM attack.Said we will never know now, but apparently I was in pretty good health before it hit me. Janice From: Grace M. Sent: Sunday, February 14, 2010 11:38 AM To: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Janice, One has to remember that the term Transverse Myelitis, means exactly that. Transverse: Across or crosswise. Myelitis: inflammation of the spinal cord. Inflammation of the cord can be caused by several different disease processes, but it can also be idiopathic, meaning that there is no known cause. Just because there is an underlying disease process does not negate the fact that the patient has indeed suffered a Transverse Myelitis attack. There are TM patients here with NMO (Myself, with relapsing LETM), Sjogrens ( Linda C. with relapsing TM) MS, those who have experienced ADEM, and other processes. There are also many patients who have experienced *idiopathic* TM, meaning that there is no known cause. Gracie
Re: [TMIC] TM and Pilates
I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very wkward these days. I've been told more than once that I had all the textbook igns for ms and I did loose my left foot followed by my right leg then my ladder was told I had tm and went through the most unbelievable facial pain. ad several doc all with different ideas and one that got me on my feet and nother that got me in pt and walking again I've been hospitalized 4 times and ow suddenly I am told that I don't have ms and show no signs of tm. I pray to od nothing comes back. I spent an entire summer pushing myself on a tread mill rying to rebuild my strenght but that was after the years of trying to cross my egs and do odd excercises on the bed floor and chair that the pt taught me. It ure has been a mentally brain warping experience. Tx grace for calling me fam. his is a great group of people and have helped me get through a lot of hallenges as well as put up with my venting from time to time. I think we all ave to vent. -Original Message-- rom: Grace M. o: rj_ran
Re: [TMIC] TM and Pilates
Well, me missus went from an initial TM dx to an MS dx after her second attack. Today, 12 years later, she still has the same lingering effects. A 'sore' back at T-8, chronic fatigue and a dislike for extreme heat and cold. BobbyJim From: Barbara AlmaTo: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 16:50 Subject: Re: [TMIC] TM and Pilates I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most unbelievable facial pain. Had several doc all with different ideas and one that got me on my feet and another that got me in pt and walking again I've been hospitalized 4 times and now suddenly I am told that I don't have ms and show no signs of tm. I pray to God nothing comes back. I spent an entire summer pushing
Re: [TMIC] TM and Pilates
Your symptoms sound a lot like mine. I was so glad to start feeling something - until the nerve pain started. Bummer But, I must say that the last set of shots I got in my back have lasted over 4 months now. Pretty exciting! Don't know if you remember my mentioning maybe traveling to Savannah to see my sister and her husband a while ago, but we leave tomorrow morning and I am so excited I can hardly stand it! First trip since TM. Wish us luck - it is a 15 hour trip, but we will take it slow. After tonite, I will be back on with you all in a couple of weeks. Janice From: Barbara Alma Sent: Sunday, February 14, 2010 4:50 PM To: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most
Re: [TMIC] TM and Pilates
She really had it rough.Hope, eventually, she will improve.We hear from others that after many years, improvement still happens.I wish her luck. Janice From: bobby jim Sent: Sunday, February 14, 2010 5:33 PM To: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com ; Barbara Alma Subject: Re: [TMIC] TM and Pilates Well, me missus went from an initial TM dx to an MS dx after her second attack. Today, 12 years later, she still has the same lingering effects. A 'sore' back at T-8, chronic fatigue and a dislike for extreme heat and cold. BobbyJim From: Barbara AlmaTo: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 16:50 Subject: Re: [TMIC] TM and Pilates I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm
Re: [TMIC] TM and Pilates
Me missus too, being the foodie that she is, sometimes cooks to exhaustion, specially when it's our turn to host the semi-monthly birthday(s) party, those being where we bunch up several bee-dayze in close proximity and have one party for them all. Plus there's also Thnxgvng and Xmas; luckily, her immediate family is only about from 10 to 12 (some can't come, etc..), so her turn to host is every three or four. My family is scattered all over 2 continents so I see them every now and then. Happy Valentine's Day to all y'all. BobbyJim From: Barbara Alma To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 6:20 Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry -- From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most unbelievable facial pain
Re: [TMIC] TM and Pilates
Improvement. me thinx she's at the stage where improvement would be the regeneration of her myelin, a feat not yet at hand. She's fully mobile, sleeps well, works an eight-hour day and loves to cook. She also likes gardening but I take care of the harder chores because after a couple of hours out in the garden, specially in the summer, she starts to fade a bit. All this, am sure, is because she's been on Avonex since March '99. BobbyJim From: Janice NicholsTo: bobby jim ; rj_ran...@yahoo.com ; tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, February 14, 2010 18:26 Subject: Re: [TMIC] TM and Pilates She really had it rough.Hope, eventually, she will improve.We hear from others that after many years, improvement still happens.I wish her luck. Janice From: bobby jim Sent: Sunday, February 14, 2010 5:33 PM To: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com ; Barbara Alma Subject: Re: [TMIC] TM and Pilates Well, me missus went from an initial TM dx to an MS dx after her second attack. Today, 12 years later, she still has the same lingering effects. A 'sore' back at T-8, chronic fatigue and a dislike for extreme heat and cold. BobbyJim From: Barbara AlmaTo: jan...@centurytel.net ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 16:50 Subject: Re: [TMIC] TM and Pilates I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Alma Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems
Re: [TMIC] TM and Pilates
We here also like to grill out as offen as we can.It's fun..(methinx). We'll grill more than meats, veggies such as corn wrapped in foil with basil leaves(fresh) wrapped around them, mixed veggies also wrapped in foil come out quite tasty as well. Bon appetit, BobbyJim From: Janice Nichols To: Patricia Cooley ; 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Sent: Sunday, February 14, 2010 11:41 Subject: Re: [TMIC] TM and Pilates Several have mentioned the difficulty in fixing a meal.Boy, did I dread that.I have gotten better at it by doing parts of it at different times of the day.I was trying to do it all at once, but really paid a price for it.Now is much easier by planning meals like casseroles, crock pot, etc., where I don't have to stand very long.What I really like is when it is warmer my husband grills and I only have to fix a couple of side dishes. In Missouri, that is in April - but we grill until the end of October. Janice From: Patricia Cooley Sent: Sunday, February 14, 2010 10:43 AM To: 'Barbara Alma' ; rj_ran...@yahoo.com ; tmic-list@eskimo.com Subject: RE: [TMIC] TM and Pilates Barb - my lesion is also at T-10 according to my neuro. On my last MRI, he said the nerves have healed and are not swollen, but the protective coating has been destroyed and that is was causing the problems. He also confirms the TM diagnosis. I am able to walk in the house without any aids, but I cannot stand alone for anymore than a few seconds. When I am moving I am o.k. but when I stop I have to have something to hold on to. My family said I waddle like a duck when walking but at least I can get where I want to go. I used to use the walker with a wheels and a seat while cooking, but I don't have to do that anymore. I am pooped after. I also use a walker when I am out and about. I need the security of having something to hold on it. I also have an electric cart so I can get around to various functions, but don't use it much during the winter. I use it when going to things like the State Fair, etc. It is always so nice when we can compare symptoms and problems. It shows we are not alone in this. Take care and don't give up! Patti - Wisconsin From: Barbara Alma [mailto:balmat...@aol.com] Sent: Sunday, February 14, 2010 6:20 AM To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy, Yes, I have residuals. I can walk, but not well without aids. When I do, I use up so much of my energy that I cannot function much after doing just a very small amount, so it's just not worth it. Around the house I use a walker with wheels for household chores like laundry and while doing my cooking prep at the kitchen table, etc. I can't walk and carry hardly anything unless it's like from one counter to another in the kitchen or if there isn't any weight to it. It just doesn't work for me. Like can't walk and chew gum, you know? It's just easier than using a cane or crutch and then going back and forth with just one thing at a time. I can load it up and carry a bunch of stuff at once. But, I really give myself a workout just trying to cook at the stove. That's a real challenge for me to stand at the stove for very long and I really miss spending more time cooking. My daughter in-law says when I start to look like a cowgirl, that's when you know that I'm in trouble and looking like I'm in danger of overdoing it. So, I do as much as I can sitting. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Barbara Alma balmat...@aol.com; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 9:51 pm Subject: Re: [TMIC] TM and Pilates Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry -- From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 -0500 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10
Re: [TMIC] TM and Pilates
Janice - Have a wonderful trip!! Tell us all about it when you return please. hugs, Linda - Original Message - From: Janice Nicholsmailto:jan...@centurytel.net To: rj_ran...@yahoo.commailto:rj_ran...@yahoo.com ; tmic-list@eskimo.commailto:tmic-list@eskimo.com ; Barbara Almamailto:balmat...@aol.com Sent: Sunday, February 14, 2010 5:24 PM Subject: Re: [TMIC] TM and Pilates Your symptoms sound a lot like mine. I was so glad to start feeling something - until the nerve pain started. Bummer But, I must say that the last set of shots I got in my back have lasted over 4 months now. Pretty exciting! Don't know if you remember my mentioning maybe traveling to Savannah to see my sister and her husband a while ago, but we leave tomorrow morning and I am so excited I can hardly stand it! First trip since TM. Wish us luck - it is a 15 hour trip, but we will take it slow. After tonite, I will be back on with you all in a couple of weeks. Janice From: Barbara Almamailto:balmat...@aol.com Sent: Sunday, February 14, 2010 4:50 PM To: jan...@centurytel.netmailto:jan...@centurytel.net ; rj_ran...@yahoo.commailto:rj_ran...@yahoo.com ; tmic-list@eskimo.commailto:tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates I still have all the same symptoms, they haven't changed. Initially as my body sort of woke up as I say, I went gradually from having no pain or feeling to having more and more pain. I still have decreased sensation in some areas and hyper or hypo sensation and pain in others. I have B/B issues too. As time goes on my symptoms still don't really change. My symptoms are so much like so many others here and that's the reason that I stay. I think this may be relative to the fact of it being spinal cord injury, not sure. Maybe injury is injury, and the effects of it remains the same depending upon where on the cord the injury happens. But, I may be over simplifying things. I am very pleased to say though, and this is extremely important to me, that when I do slack off on my exercises and notice my body getting weaker, it does bounce back when I get back into an exercise routine again. I generally stop doing my exercises when I get sick and need all the energy and strength just to get around the house and to the bathroom. And at that point I really weaken. I know this happens to many of you. If I have the flu or any infection, it is really hard on my body. Hugs, Barbara A in Auburn CA -Original Message- From: Janice Nichols jan...@centurytel.net To: rj_ran...@yahoo.com; tmic-list@eskimo.com; Barbara Alma balmat...@aol.com Sent: Sun, Feb 14, 2010 9:23 am Subject: Re: [TMIC] TM and Pilates Looks like Randy and Barbara are living proof that TM, or whatever, is still not understood very well. Seems strange that they follow the symptoms for a while and then change some, but then isn't that what TM does? I am certainly not the same as I was when TM hit - yet I still follow the symptoms, a couple added and a couple disappeared.What a situation it puts us in, but at least we all have each other. Can't tell you what a difference it made to discover this website.Thanks guys. Janice From: Barbara Almamailto:balmat...@aol.com Sent: Saturday, February 13, 2010 11:39 PM To: rj_ran...@yahoo.commailto:rj_ran...@yahoo.com ; tmic-list@eskimo.commailto:tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10
Re: [TMIC] TM and Pilates
Randy, So you are telling us that you have absolutely no symptoms and you feel great? If so, I am thrilled for you, but am wondering why you are on this website. Janice -- From: rj_ran...@yahoo.com Sent: Friday, February 12, 2010 5:39 AM To: I Whiddett i.whidd...@sky.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates I had the event in 2005. - was told 'looks like early m s' and treated. Told I probably would never use right leg again - told pt would not help. Struggled to walk and pee for years - went for pt anyway (after 2nd opioin) - given a transverse mylophy - ediopathic 'explantation' in 06. Now, no symptoms, tests all perfect, and I am told that I don't have ms or tm and they don't know what happened or why. --Original Message-- From: I Whiddett To: tmic-list@eskimo.com Subject: [TMIC] TM and Pilates Sent: Feb 12, 2010 6:32 AM I was diagnosed with transverse myelitis in May 2009. My symptoms developed over a few days and I was discharged from hospital after 6 weeks with partial recovery in my right arm but have residual numbness and tightness through most of my body. I have progressed to getting about with a wheely walker and am wondering whether a Pilates class could be beneficial. Another suggestion has been accupuncture. Once the initial flurry of interest in me as an 'unusual' case had died down, I felt abandoned and left to my own devices by the British National Health. Any recommendations on the above would be welcome. Iris Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
I went back to the neuro a few weeks back for the most recent check ups. I joined this websight after I was diagnosed in 05. Spent 3 years trying to get walking back. I still can stand up quickly and I can't run. I guess I should just leave the site now that my neuro says I'm fine. --Original Message-- From: Janice Nichols To: rj_ran...@yahoo.com To: I Whiddett To: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:14 PM Randy, So you are telling us that you have absolutely no symptoms and you feel great? If so, I am thrilled for you, but am wondering why you are on this website. Janice -- From: rj_ran...@yahoo.com Sent: Friday, February 12, 2010 5:39 AM To: I Whiddett i.whidd...@sky.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates I had the event in 2005. - was told 'looks like early m s' and treated. Told I probably would never use right leg again - told pt would not help. Struggled to walk and pee for years - went for pt anyway (after 2nd opioin) - given a transverse mylophy - ediopathic 'explantation' in 06. Now, no symptoms, tests all perfect, and I am told that I don't have ms or tm and they don't know what happened or why. --Original Message-- From: I Whiddett To: tmic-list@eskimo.com Subject: [TMIC] TM and Pilates Sent: Feb 12, 2010 6:32 AM I was diagnosed with transverse myelitis in May 2009. My symptoms developed over a few days and I was discharged from hospital after 6 weeks with partial recovery in my right arm but have residual numbness and tightness through most of my body. I have progressed to getting about with a wheely walker and am wondering whether a Pilates class could be beneficial. Another suggestion has been accupuncture. Once the initial flurry of interest in me as an 'unusual' case had died down, I felt abandoned and left to my own devices by the British National Health. Any recommendations on the above would be welcome. Iris Sent from my Verizon Wireless BlackBerry Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
I DIDN'T MEAN THAT IN A NEGATIVE WAY.IT IS GREAT TO HAVE AS MANY AS POSSIBLE TO GIVE INPUT.I WAS JUST CURIOUS AS TO THE STATE (PHYSICALLY) HE WAS IN. PLEASE DON'T TAKE IT THE WRONG WAY. jANICE From: Grace M. Sent: Saturday, February 13, 2010 1:26 PM To: rj_ran...@yahoo.com Cc: Janice Nichols ; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Randy, You're like family here at the site and have a lot of good input to offer. I think that you and I came around the same time. Janice, we don't have to currently be ill in order to participate here. ALL are welcome. It's not an exclusive club. Respectfully, Grace
RE: [TMIC] TM and Pilates
Randy you are still part of the TM family. You spent 3 hard years to get where you are now, and you give us all inspiration that maybe we too will improve. Please don't leave. You can always give input after what you went through. I hope you continue to do well in the future. Patti - Wisconsin -Original Message- From: rj_ran...@yahoo.com [mailto:rj_ran...@yahoo.com] Sent: Saturday, February 13, 2010 1:20 PM To: Janice Nichols; I Whiddett; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates I went back to the neuro a few weeks back for the most recent check ups. I joined this websight after I was diagnosed in 05. Spent 3 years trying to get walking back. I still can stand up quickly and I can't run. I guess I should just leave the site now that my neuro says I'm fine. --Original Message-- From: Janice Nichols To: rj_ran...@yahoo.com To: I Whiddett To: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:14 PM Randy, So you are telling us that you have absolutely no symptoms and you feel great? If so, I am thrilled for you, but am wondering why you are on this website. Janice -- From: rj_ran...@yahoo.com Sent: Friday, February 12, 2010 5:39 AM To: I Whiddett i.whidd...@sky.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates I had the event in 2005. - was told 'looks like early m s' and treated. Told I probably would never use right leg again - told pt would not help. Struggled to walk and pee for years - went for pt anyway (after 2nd opioin) - given a transverse mylophy - ediopathic 'explantation' in 06. Now, no symptoms, tests all perfect, and I am told that I don't have ms or tm and they don't know what happened or why. --Original Message-- From: I Whiddett To: tmic-list@eskimo.com Subject: [TMIC] TM and Pilates Sent: Feb 12, 2010 6:32 AM I was diagnosed with transverse myelitis in May 2009. My symptoms developed over a few days and I was discharged from hospital after 6 weeks with partial recovery in my right arm but have residual numbness and tightness through most of my body. I have progressed to getting about with a wheely walker and am wondering whether a Pilates class could be beneficial. Another suggestion has been accupuncture. Once the initial flurry of interest in me as an 'unusual' case had died down, I felt abandoned and left to my own devices by the British National Health. Any recommendations on the above would be welcome. Iris Sent from my Verizon Wireless BlackBerry Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
Randy, Of course you should stay on the website - why not? Again, please do NOT take my statement the wrong way. I think I am getting gun shy about responding.It all seems to come out wrong. Janice -- From: rj_ran...@yahoo.com Sent: Saturday, February 13, 2010 1:19 PM To: Janice Nichols jan...@centurytel.net; I Whiddett i.whidd...@sky.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates I went back to the neuro a few weeks back for the most recent check ups. I joined this websight after I was diagnosed in 05. Spent 3 years trying to get walking back. I still can stand up quickly and I can't run. I guess I should just leave the site now that my neuro says I'm fine. --Original Message-- From: Janice Nichols To: rj_ran...@yahoo.com To: I Whiddett To: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:14 PM Randy, So you are telling us that you have absolutely no symptoms and you feel great? If so, I am thrilled for you, but am wondering why you are on this website. Janice -- From: rj_ran...@yahoo.com Sent: Friday, February 12, 2010 5:39 AM To: I Whiddett i.whidd...@sky.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates I had the event in 2005. - was told 'looks like early m s' and treated. Told I probably would never use right leg again - told pt would not help. Struggled to walk and pee for years - went for pt anyway (after 2nd opioin) - given a transverse mylophy - ediopathic 'explantation' in 06. Now, no symptoms, tests all perfect, and I am told that I don't have ms or tm and they don't know what happened or why. --Original Message-- From: I Whiddett To: tmic-list@eskimo.com Subject: [TMIC] TM and Pilates Sent: Feb 12, 2010 6:32 AM I was diagnosed with transverse myelitis in May 2009. My symptoms developed over a few days and I was discharged from hospital after 6 weeks with partial recovery in my right arm but have residual numbness and tightness through most of my body. I have progressed to getting about with a wheely walker and am wondering whether a Pilates class could be beneficial. Another suggestion has been accupuncture. Once the initial flurry of interest in me as an 'unusual' case had died down, I felt abandoned and left to my own devices by the British National Health. Any recommendations on the above would be welcome. Iris Sent from my Verizon Wireless BlackBerry Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
Hi Janice, No offense taken. Just wanted to make sure that Randy doesn't leave us. He's been a really good friend to all of us and has always been very positive and supportive. No harm. No foul. Grace
Re: [TMIC] TM and Pilates
Hi Randy, we all know those neuro's are wrong a lot and I bet you have some residual TM left. There foreStay with the group. We value your input and I bet you still learn from other TMIC folks. Cindy McLeroy - Original Message - From: rj_ran...@yahoo.com To: Janice Nichols jan...@centurytel.net; I Whiddett i.whidd...@sky.com; tmic-list@eskimo.com Sent: Saturday, February 13, 2010 11:19 AM Subject: Re: [TMIC] TM and Pilates I went back to the neuro a few weeks back for the most recent check ups. I joined this websight after I was diagnosed in 05. Spent 3 years trying to get walking back. I still can stand up quickly and I can't run. I guess I should just leave the site now that my neuro says I'm fine. --Original Message-- From: Janice Nichols To: rj_ran...@yahoo.com To: I Whiddett To: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:14 PM Randy, So you are telling us that you have absolutely no symptoms and you feel great? If so, I am thrilled for you, but am wondering why you are on this website. Janice -- From: rj_ran...@yahoo.com Sent: Friday, February 12, 2010 5:39 AM To: I Whiddett i.whidd...@sky.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates I had the event in 2005. - was told 'looks like early m s' and treated. Told I probably would never use right leg again - told pt would not help. Struggled to walk and pee for years - went for pt anyway (after 2nd opioin) - given a transverse mylophy - ediopathic 'explantation' in 06. Now, no symptoms, tests all perfect, and I am told that I don't have ms or tm and they don't know what happened or why. --Original Message-- From: I Whiddett To: tmic-list@eskimo.com Subject: [TMIC] TM and Pilates Sent: Feb 12, 2010 6:32 AM I was diagnosed with transverse myelitis in May 2009. My symptoms developed over a few days and I was discharged from hospital after 6 weeks with partial recovery in my right arm but have residual numbness and tightness through most of my body. I have progressed to getting about with a wheely walker and am wondering whether a Pilates class could be beneficial. Another suggestion has been accupuncture. Once the initial flurry of interest in me as an 'unusual' case had died down, I felt abandoned and left to my own devices by the British National Health. Any recommendations on the above would be welcome. Iris Sent from my Verizon Wireless BlackBerry Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most unbelievable facial pain. Had several doc all with different ideas and one that got me on my feet and another that got me in pt and walking again I've been hospitalized 4 times and now suddenly I am told that I don't have ms and show no signs of tm. I pray to God nothing comes back. I spent an entire summer pushing myself on a tread mill trying to rebuild my strenght but that was after the years of trying to cross my legs and do odd excercises on the bed floor and chair that the pt taught me. It sure has been a mentally brain warping experience. Tx grace for calling me fam. This is a great group of people and have helped me get through a lot of challenges as well as put up with my venting from time to time. I think we all have to vent. --Original Message-- From: Grace M. To: rj_ran...@yahoo.com Cc: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:26 PM Randy, You're like family here at the site and have a lot of good input to offer. I think that you and I came around the same time. Janice, we don't have to currently be ill in order to participate here. ALL are welcome. It's not an exclusive club. Respectfully, Grace Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
Randy, I think it is imperative that you stay in touch with us. You are not 100% anyway and may still need us as much as we need you as an active participant. You have been through the same thing as many of us have.nuff said? Janice -- From: rj_ran...@yahoo.com Sent: Saturday, February 13, 2010 3:18 PM To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very awkward these days. I've been told more than once that I had all the textbook signs for ms and I did loose my left foot followed by my right leg then my bladder was told I had tm and went through the most unbelievable facial pain. Had several doc all with different ideas and one that got me on my feet and another that got me in pt and walking again I've been hospitalized 4 times and now suddenly I am told that I don't have ms and show no signs of tm. I pray to God nothing comes back. I spent an entire summer pushing myself on a tread mill trying to rebuild my strenght but that was after the years of trying to cross my legs and do odd excercises on the bed floor and chair that the pt taught me. It sure has been a mentally brain warping experience. Tx grace for calling me fam. This is a great group of people and have helped me get through a lot of challenges as well as put up with my venting from time to time. I think we all have to vent. --Original Message-- From: Grace M. To: rj_ran...@yahoo.com Cc: Janice Nichols Cc: tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Sent: Feb 13, 2010 2:26 PM Randy, You're like family here at the site and have a lot of good input to offer. I think that you and I came around the same time. Janice, we don't have to currently be ill in order to participate here. ALL are welcome. It's not an exclusive club. Respectfully, Grace Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
Well put, Janice Jeanne
Re: [TMIC] TM and Pilates
Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very wkward these days. I've been told more than once that I had all the textbook igns for ms and I did loose my left foot followed by my right leg then my ladder was told I had tm and went through the most unbelievable facial pain. ad several doc all with different ideas and one that got me on my feet and nother that got me in pt and walking again I've been hospitalized 4 times and ow suddenly I am told that I don't have ms and show no signs of tm. I pray to od nothing comes back. I spent an entire summer pushing myself on a tread mill rying to rebuild my strenght but that was after the years of trying to cross my egs and do odd excercises on the bed floor and chair that the pt taught me. It ure has been a mentally brain warping experience. Tx grace for calling me fam. his is a great group of people and have helped me get through a lot of hallenges as well as put up with my venting from time to time. I think we all ave to vent. -Original Message-- rom: Grace M. o: rj_ran...@yahoo.com c: Janice Nichols c: tmic-list@eskimo.com ubject: Re: [TMIC] TM and Pilates ent: Feb 13, 2010 2:26 PM Randy, ou're like family here at the site and have a lot of good input to offer. I hink that you and I came around the same time. anice, we don't have to currently be ill in order to participate here. ALL are elcome. It's not an exclusive club. espectfully, race Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
Barbara you helped restore some of my sanity. Do you still have residual problems? My same neuro suggested that it have been auto immunine disorder. I didn't know if he was suggesting a virus and when I asked I think that he might have thought that I just don't have enough background knowledge to understand. I know that I have been checked for a lot of pathogens and each time it was always negative. I did get eatten up by mosqiutoes in the deep woods of a national forrest 2 weeks before the tm experience set in. Sent from my Verizon Wireless BlackBerry -Original Message- From: Barbara Alma balmat...@aol.com Date: Sun, 14 Feb 2010 00:39:33 To: rj_ran...@yahoo.com; tmic-list@eskimo.com Subject: Re: [TMIC] TM and Pilates Hi Randy and all TMIC, I am another one who was originally told that I had TM and am now being told that I don't, and that's by the same doctor and another as well. I've never been talked to about MS though. I had only one attack, was paralyzed from waist to toes within 15 minutes, at lesion T8-10. I even went to 2 different hospitals, as I wanted a second opinion, both with a TM diagnosis. After about 3 yrs I was told by my first Neuro, who became my treating Neuro that I didn't have TM. He didn't know what caused the paralysis and no other information as to why. Not a spinal infarction or stroke, or anything else. I had trouble with my disability claim and he was the cause so I changed Neuro's a few of years later and she had MRI's done and told me the same thing. MRI's have come a long way and the lesion is not there any longer and they can't see any cause, like a bleed or anything. She looked for evidence of a bleed because she wanted to rule out the possibility of it happening again and couldn't find it. So guys, since I've had 2 Neuro's both tell me that I don't have TM, I really don't care. I'm sticking with it, and you are just stuck with me. I'm happy here, I get the support that I need, I give it when I can, and I'm not going anywhere. I really don't know what caused my problems, and I really don't care at this point. It is what it is. I've had this crap for over 10 years and it's not going away. I had TM symptoms and that's where I started, so I'm sticking with it. Hugs, Barbara A in Auburn CA -Original Message- From: rj_ran...@yahoo.com To: Grace M. grace...@gmail.com Cc: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Sat, Feb 13, 2010 1:18 pm Subject: Re: [TMIC] TM and Pilates Janice its ok. I've actually been wondering if I should stay. I feel very wkward these days. I've been told more than once that I had all the textbook igns for ms and I did loose my left foot followed by my right leg then my ladder was told I had tm and went through the most unbelievable facial pain. ad several doc all with different ideas and one that got me on my feet and nother that got me in pt and walking again I've been hospitalized 4 times and ow suddenly I am told that I don't have ms and show no signs of tm. I pray to od nothing comes back. I spent an entire summer pushing myself on a tread mill rying to rebuild my strenght but that was after the years of trying to cross my egs and do odd excercises on the bed floor and chair that the pt taught me. It ure has been a mentally brain warping experience. Tx grace for calling me fam. his is a great group of people and have helped me get through a lot of hallenges as well as put up with my venting from time to time. I think we all ave to vent. -Original Message-- rom: Grace M. o: rj_ran...@yahoo.com c: Janice Nichols c: tmic-list@eskimo.com ubject: Re: [TMIC] TM and Pilates ent: Feb 13, 2010 2:26 PM Randy, ou're like family here at the site and have a lot of good input to offer. I hink that you and I came around the same time. anice, we don't have to currently be ill in order to participate here. ALL are elcome. It's not an exclusive club. espectfully, race Sent from my Verizon Wireless BlackBerry
[TMIC] TM and Pilates
I was diagnosed with transverse myelitis in May 2009. My symptoms developed over a few days and I was discharged from hospital after 6 weeks with partial recovery in my right arm but have residual numbness and tightness through most of my body. I have progressed to getting about with a wheely walker and am wondering whether a Pilates class could be beneficial. Another suggestion has been accupuncture. Once the initial flurry of interest in me as an 'unusual' case had died down, I felt abandoned and left to my own devices by the British National Health. Any recommendations on the above would be welcome. Iris
Re: [TMIC] TM and Pilates
I had the event in 2005. - was told 'looks like early m s' and treated. Told I probably would never use right leg again - told pt would not help. Struggled to walk and pee for years - went for pt anyway (after 2nd opioin) - given a transverse mylophy - ediopathic 'explantation' in 06. Now, no symptoms, tests all perfect, and I am told that I don't have ms or tm and they don't know what happened or why. --Original Message-- From: I Whiddett To: tmic-list@eskimo.com Subject: [TMIC] TM and Pilates Sent: Feb 12, 2010 6:32 AM I was diagnosed with transverse myelitis in May 2009. My symptoms developed over a few days and I was discharged from hospital after 6 weeks with partial recovery in my right arm but have residual numbness and tightness through most of my body. I have progressed to getting about with a wheely walker and am wondering whether a Pilates class could be beneficial. Another suggestion has been accupuncture. Once the initial flurry of interest in me as an 'unusual' case had died down, I felt abandoned and left to my own devices by the British National Health. Any recommendations on the above would be welcome. Iris Sent from my Verizon Wireless BlackBerry
Re: [TMIC] TM and Pilates
Hi Iris, I have a Pilates machine and a recumbent bike. I use them both, at different times, the Pilates is great for core stregthening and the bike good for the legs on me. There is so much on the Pilates that I don't do and may never be able to do, but what I do really does help and I modify most of what the tape shows. It can be difficult to get up and down off of though if I am tired or do too much. I think it would be good for you to go to a studio that has a person who could have a one on one chat with you so that you can talk about your strengths and weaknesses and can see how your body moves. Many studios have them raised off the floor, but some don't. If you attend a class, you will need to do only certain exercises as some will probably be too strenuous for you. They may move from one exercise to another faster than you will be able to move to and you may have to do a modified version of the exercise. With a session ahead of time, you'll have all of that worked out and you'll know if it'll work for you. You may decide after this to get one of your own and then work on your own at home. Actually, I bought my Pilates new through Ebay, but the Total Gym can also be used as a Pilates, and so much more. Does anyone do that? I second guessed that decision after purchasing the Pilates. Much more versatile I think. Hugs, Barbara A in Auburn CA -Original Message- From: I Whiddett i.whidd...@sky.com To: tmic-list@eskimo.com Sent: Fri, Feb 12, 2010 3:32 am Subject: [TMIC] TM and Pilates I was diagnosed with transverse myelitis in May 2009. My symptoms developed over a few days and I was discharged from hospital after 6 weeks with partial recovery in my right arm but have residual numbness and tightness through most of my body. I have progressed to getting about with a wheely walker and am wondering whether a Pilates class could be beneficial. Another suggestion has been accupuncture. Once the initial flurry of interest in me as an 'unusual' case had died down, I felt abandoned and left to my own devices by the British National Health. Any recommendations on the above would be welcome. Iris
