Comments on: Sudden Onset http://calitreview.com/11 An arts and culture magazine. Mon, 21 May 2012 14:28:28 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: chandan kumar jana from INDIAhttp://calitreview.com/11/comment-page-2#comment-260455 chandan kumar jana from INDIA Sun, 25 Mar 2012 09:39:47 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-260455 I have been suffering from TM from 2003 when I was just 21yrs. It was a sudden on-set and no improvement has happened. I am leading a very painful life bedridden or wheel-chair bound. I do not understand how it will end and when? I have been suffering from TM from 2003 when I was just 21yrs. It was a sudden on-set and no improvement has happened. I am leading a very painful life bedridden or wheel-chair bound. I do not understand how it will end and when?

]]> By: Joehttp://calitreview.com/11/comment-page-2#comment-228551 Joe Sun, 08 Jan 2012 05:37:39 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-228551 I have an Idiopathic diagnosis of TM and that's still not completely confirmed, but the only thing that makes sense at this point. Chronic pain began April 2010, but did not cause immediate paralysis and have yet to experience that. Just some attacks that felt like my spine was being crushed and uncontrollable leg stiffness / spasms. Just pain, tingling and crushing, mainly on lower part of the body; achy and arthritic feeling in upper body with shooting pain sometimes. Most of pain is on left side. Every blood test has been done, lumbar extraction (spinal tap), MRIs, etc. before this possible diagnosis was given in Oct-2011. I have been on pain meds almost the entire time and finally convinced a doctor to prescribe antibiotics. I noticed immediate help and could lower the amount of pain meds I was taking each day and as long as I keep taking antibiotics. I am going through a period now w/o narcotic pain relief medications. I have also pushed to try the cyclophosphamide treatment and haven't gotten anywhere with being able to at least try it. I've had steroids oral, spine injections and infusions w/ no help or benefit. A Legion was found at C-4, but ~6 months after symptoms started, and was no longer there ~1 year after initial symptoms. I was wasting time with family doctor and orthopedic dr. until 1 noticed the neurological symptoms. I have an Idiopathic diagnosis of TM and that’s still not completely confirmed, but the only thing that makes sense at this point. Chronic pain began April 2010, but did not cause immediate paralysis and have yet to experience that. Just some attacks that felt like my spine was being crushed and uncontrollable leg stiffness / spasms. Just pain, tingling and crushing, mainly on lower part of the body; achy and arthritic feeling in upper body with shooting pain sometimes. Most of pain is on left side. Every blood test has been done, lumbar extraction (spinal tap), MRIs, etc. before this possible diagnosis was given in Oct-2011. I have been on pain meds almost the entire time and finally convinced a doctor to prescribe antibiotics. I noticed immediate help and could lower the amount of pain meds I was taking each day and as long as I keep taking antibiotics. I am going through a period now w/o narcotic pain relief medications.

I have also pushed to try the cyclophosphamide treatment and haven’t gotten anywhere with being able to at least try it. I’ve had steroids oral, spine injections and infusions w/ no help or benefit. A Legion was found at C-4, but ~6 months after symptoms started, and was no longer there ~1 year after initial symptoms. I was wasting time with family doctor and orthopedic dr. until 1 noticed the neurological symptoms.

]]> By: annhttp://calitreview.com/11/comment-page-2#comment-186649 ann Fri, 07 Oct 2011 01:30:47 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-186649 Rick, my 42 year old brother was diagnosed at the end of Feb. 2011 and he is competely paralyzed from the chest down. I'm so glad to hear you now walk with a cane and am curious how you were treated?? My brother spent about 4-5 weeks in the hospital with 5 days steriod treatment and 7 plasma exhanges without any improvment. He went to a rehabilitation hospital for 2 months to learn how to live like this. He is currently having remicade infusions, but has not seen any improvement. Fortunately, he is amazingly strong and is back to work, but is confined to a wheel chair and deals with the bowel and bladder issues and nerve pain. Would you mind sharing what treatments you received and where your spine was impacted? Thank you and I wish you all the best with continued improvement! I love your attitude! Rick, my 42 year old brother was diagnosed at the end of Feb. 2011 and he is competely paralyzed from the chest down. I’m so glad to hear you now walk with a cane and am curious how you were treated??

My brother spent about 4-5 weeks in the hospital with 5 days steriod treatment and 7 plasma exhanges without any improvment. He went to a rehabilitation hospital for 2 months to learn how to live like this. He is currently having remicade infusions, but has not seen any improvement.

Fortunately, he is amazingly strong and is back to work, but is confined to a wheel chair and deals with the bowel and bladder issues and nerve pain.

Would you mind sharing what treatments you received and where your spine was impacted?

Thank you and I wish you all the best with continued improvement! I love your attitude!

]]> By: pathttp://calitreview.com/11/comment-page-2#comment-178245 pat Sat, 27 Aug 2011 22:36:49 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-178245 Iwas diagnosed 3 years ago with TM.I was given pain meds,steroids,all kinds of meds.I suffered chest pains some paralysis u name it.The first hospital I went to was very rude and told me I had had a panic attack.Thank GOD the next hospital new something was wrong.Iwent through physical and occupational therapy.Iwas unable to work and soon lost my job due to physical limitations.I still suffer with spasms,tingling in my hands and arms.On top of that I now suffer also with diabetes and high bp.Will the numbness and pain ever go away?I do not qualify for disability so Iam trying to be somewhat optpmistic abt.my future.But it is hard since I have mainly done physical wrk for the past 20 years. Iwas diagnosed 3 years ago with TM.I was given pain meds,steroids,all kinds of meds.I suffered chest pains some paralysis u name it.The first hospital I went to was very rude and told me I had had a panic attack.Thank GOD the next hospital new something was wrong.Iwent through physical and occupational therapy.Iwas unable to work and soon lost my job due to physical limitations.I still suffer with spasms,tingling in my hands and arms.On top of that I now suffer also with diabetes and high bp.Will the numbness and pain ever go away?I do not qualify for disability so Iam trying to be somewhat optpmistic abt.my future.But it is hard since I have mainly done physical wrk for the past 20 years.

]]> By: Rickhttp://calitreview.com/11/comment-page-2#comment-175526 Rick Mon, 15 Aug 2011 04:19:07 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-175526 I have been diag with t/m late May 2011 . this page sounds like reliving my life. I spent 2months in hospital not standing to now walking with a cane. Only advice is never give up, move what ever you can as much as you can. The sooner and the more you fight gravity the better. This will only keep you down if you let it. So don,t ! Good luck to all I have been diag with t/m late May 2011 . this page sounds like reliving my life. I spent 2months in hospital not standing to now walking with a cane.

Only advice is never give up, move what ever you can as much as you can. The sooner and the more you fight gravity the better.

This will only keep you down if you let it. So don,t !

Good luck to all

]]> By: Jaclynhttp://calitreview.com/11/comment-page-2#comment-170634 Jaclyn Sat, 23 Jul 2011 00:29:45 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-170634 I was really taken by the following paragraph, "The greatest fear among the attending ER staff was what is known as an “ascending” neurological disorder: that is, one that ascends up the body and cuts off nerve response to the heart or lungs and thus induces cardiac or respiratory arrest. Guillain-Barre syndrome, which is something like polio, tends to do this. Another possibility was some kind of stroke. Now, that’s a word that will send chills down your spine even when you can’t feel your spine. Or it could be a “presentation,” in doctor talk, that signals the onset of MS, or ALS (Lou Gehrig’s Disease), or God knows what." My mother was diagnosed with Transverse Myelitis at T8 on March, 2011. My family spent a week in an Intensive Care Unit worrying about what was happening to her, "How long would this last", would it get worse" and "would it ascend"... While the diagnosis was a relief from the standpoint of now we can "start to cope", TM is such a drastic, life changing disorder. I wish all of those living with TM and all of the families affected by TM STRENGTH. Thank you for sharing your stories. I was really taken by the following paragraph, “The greatest fear among the attending ER staff was what is known as an “ascending” neurological disorder: that is, one that ascends up the body and cuts off nerve response to the heart or lungs and thus induces cardiac or respiratory arrest. Guillain-Barre syndrome, which is something like polio, tends to do this. Another possibility was some kind of stroke. Now, that’s a word that will send chills down your spine even when you can’t feel your spine. Or it could be a “presentation,” in doctor talk, that signals the onset of MS, or ALS (Lou Gehrig’s Disease), or God knows what.”

My mother was diagnosed with Transverse Myelitis at T8 on March, 2011. My family spent a week in an Intensive Care Unit worrying about what was happening to her, “How long would this last”, would it get worse” and “would it ascend”… While the diagnosis was a relief from the standpoint of now we can “start to cope”, TM is such a drastic, life changing disorder.

I wish all of those living with TM and all of the families affected by TM STRENGTH. Thank you for sharing your stories.

]]> By: Suzannehttp://calitreview.com/11/comment-page-2#comment-102925 Suzanne Tue, 13 Jul 2010 17:44:08 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-102925 Mar 09, after 3 months of leg weakness, pins and needles, muscle twitches, electric shock sensations, back spasms etc my Neurologist suggested inflammatory myleopathy. I eventually regained my strength to walk through physio exercises every day. Have experienced a relapse, possibly the weakness and symptoms are worse than before but through the physio I feel stronger although can still only shuffle everywhere but certainly better than being completely paralysed. GP suggested recurrent TM and neurologist has not ruled it out so back to all the tests (which were all clear last time except the VEP which was abnormal). Will return to work in wheelchair for the time being and work towards regaining my feet again - I've done it once so am positive can do it again. Would be interested to know if anyone else has experienced this recurrent trend which defies tests. Mar 09, after 3 months of leg weakness, pins and needles, muscle twitches, electric shock sensations, back spasms etc my Neurologist suggested inflammatory myleopathy. I eventually regained my strength to walk through physio exercises every day.
Have experienced a relapse, possibly the weakness and symptoms are worse than before but through the physio I feel stronger although can still only shuffle everywhere but certainly better than being completely paralysed.
GP suggested recurrent TM and neurologist has not ruled it out so back to all the tests (which were all clear last time except the VEP which was abnormal). Will return to work in wheelchair for the time being and work towards regaining my feet again – I’ve done it once so am positive can do it again.
Would be interested to know if anyone else has experienced this recurrent trend which defies tests.

]]> By: michttp://calitreview.com/11/comment-page-2#comment-101972 mic Mon, 05 Jul 2010 21:03:38 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-101972 Dear Bloggers, I read all of your comments and sympathize with you all. This is an unpredicable disease that affects our lives and those of the family in many difficult ways. Hopefully, we all have strong family support and good family values and belief in God to help us through the tough times. I was diagnosed with TM just about 4 weeks ago, and have the arm and leg weakness, strange sensations (hot, cold, crawling) and waist banding from time to time, dizziness and leg spasms. I feel lucky its not worse so far. Try to remain positive, with a strong positive mind and outlook and place trust in God, for he will cure all ills. And pray, as I shall be praying for all of us. Mike Dear Bloggers,
I read all of your comments and sympathize with you all. This is an unpredicable disease that affects our lives and those of the family in many difficult ways. Hopefully, we all have strong family support and good family values and belief in God to help us through the tough times. I was diagnosed with TM just about 4 weeks ago, and have the arm and leg weakness, strange sensations (hot, cold, crawling) and waist banding from time to time, dizziness and leg spasms. I feel lucky its not worse so far. Try to remain positive, with a strong positive mind and outlook and place trust in God, for he will cure all ills. And pray, as I shall be praying for all of us.
Mike

]]> By: Jamie Adairhttp://calitreview.com/11/comment-page-1#comment-98602 Jamie Adair Tue, 01 Jun 2010 20:08:41 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-98602 March 8th, 2001 was the day my mother got sick. I was eleven years old. The day before (March 7th) she got lasik eye surgery to improve her vision. I remember going into her bathroom to brush my teeth and she was laying bed wearing these eye patches and asked me to come rub her legs because she said they hurt so bad. Thinking that was weird and gross, I rubbed her legs for no more then a minute and went to bed because it was a school night. I had a nightmare that night. I heard screaming and i remember seeing the clock said 12:31am. It ended up not being a nightmare. My mother woke up to go to bathroom, took two wobbly steps and fell on the floor scream and writhing in agony and pain. Those were the last two steps she ever took. My father and older brother carried her down to the car and drove her to the emergency room. I went to school next day, still unaware of everything that had even happened. I got pulled out of class in the afternoon by my aunt and she drove us an hour away to a hospital in Akron that she had gotten to transferred to during the day. I remember they didn't know what was going on for awhile. Then once she was diagnosed they told her she would get movement back in a day or two. Then it turned into weeks, then after about 3 months they said it was very unlikely she would ever get any movement back again. It was so strange being so young and seeing my mother like that. I remember over-hearing the doctor trying to silently talk to my father about it. He told her she had level 10 chronic pain, paralyzed from the navel down. She had the option of going on lower-dose medicine which would be a better long term option for her. Or she could go on high dose medicines. She wanted the high dose and because she was writhing in pain constantly. The doctor warned my dad that the human body is not made to endure such strong medicine and the levels of what she takes will literally eat away her organs within ten years and turn her into a drug addict as well as a victim of TM. She has been on everything under the sun and methadone is what i think will be the death of her. It is basically synthetic heroin. Time and time again for nine years now I have spent hours and hours and days inside of hospital waiting rooms and sleeping on couches. She has no feeling, but has what they called phantom pain. She has never been able to feel or move her legs but she complains a constant fire hot pins and needles shooting pain. She has fallen out of her wheelchair dozens of times, because she is so out of it from her pain meds all the time that she can't even keep her eyes open and awake long enough to sit up and have a regular conversation. She has broke her leg twice and not even known it until people would tell her how bruised and swollen her legs would be. She goesinto these very deep shallow breathings and almost stops breathing every few months. They give her this drug called narcan to reverse the opiates and I have never anyone is such agony as what i see her in when they giver that. This past weekend I was watching her sleep and noticed she was barely breathing so i took her to the ER. They gave her the narcan and this time it had no effect on her. So they transferred her again to a bigger hosiptal and she has been on a ventilator (against her wishes) for three days now. She finally woke up today and wrote on a note to take the tubes out of her mouth. I hate watching her go through this. For nine years now i have been watching my mother suffer. My dad left when i was 15 so I have been dealing with this alone, since i am the youngest of the kids and they were all gone and moved out. I don't even know what to do. TM is the worst disease ever. March 8th, 2001 was the day my mother got sick. I was eleven years old. The day before (March 7th) she got lasik eye surgery to improve her vision. I remember going into her bathroom to brush my teeth and she was laying bed wearing these eye patches and asked me to come rub her legs because she said they hurt so bad. Thinking that was weird and gross, I rubbed her legs for no more then a minute and went to bed because it was a school night. I had a nightmare that night. I heard screaming and i remember seeing the clock said 12:31am. It ended up not being a nightmare. My mother woke up to go to bathroom, took two wobbly steps and fell on the floor scream and writhing in agony and pain. Those were the last two steps she ever took. My father and older brother carried her down to the car and drove her to the emergency room. I went to school next day, still unaware of everything that had even happened. I got pulled out of class in the afternoon by my aunt and she drove us an hour away to a hospital in Akron that she had gotten to transferred to during the day. I remember they didn’t know what was going on for awhile. Then once she was diagnosed they told her she would get movement back in a day or two. Then it turned into weeks, then after about 3 months they said it was very unlikely she would ever get any movement back again. It was so strange being so young and seeing my mother like that. I remember over-hearing the doctor trying to silently talk to my father about it. He told her she had level 10 chronic pain, paralyzed from the navel down. She had the option of going on lower-dose medicine which would be a better long term option for her. Or she could go on high dose medicines. She wanted the high dose and because she was writhing in pain constantly. The doctor warned my dad that the human body is not made to endure such strong medicine and the levels of what she takes will literally eat away her organs within ten years and turn her into a drug addict as well as a victim of TM. She has been on everything under the sun and methadone is what i think will be the death of her. It is basically synthetic heroin. Time and time again for nine years now I have spent hours and hours and days inside of hospital waiting rooms and sleeping on couches. She has no feeling, but has what they called phantom pain. She has never been able to feel or move her legs but she complains a constant fire hot pins and needles shooting pain. She has fallen out of her wheelchair dozens of times, because she is so out of it from her pain meds all the time that she can’t even keep her eyes open and awake long enough to sit up and have a regular conversation. She has broke her leg twice and not even known it until people would tell her how bruised and swollen her legs would be. She goesinto these very deep shallow breathings and almost stops breathing every few months. They give her this drug called narcan to reverse the opiates and I have never anyone is such agony as what i see her in when they giver that. This past weekend I was watching her sleep and noticed she was barely breathing so i took her to the ER. They gave her the narcan and this time it had no effect on her. So they transferred her again to a bigger hosiptal and she has been on a ventilator (against her wishes) for three days now. She finally woke up today and wrote on a note to take the tubes out of her mouth. I hate watching her go through this. For nine years now i have been watching my mother suffer. My dad left when i was 15 so I have been dealing with this alone, since i am the youngest of the kids and they were all gone and moved out. I don’t even know what to do. TM is the worst disease ever.

]]> By: Evelyn Mougeothttp://calitreview.com/11/comment-page-1#comment-93676 Evelyn Mougeot Mon, 19 Apr 2010 16:36:23 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-93676 My 7 year old granddaughter has just been diagnosed with transverse myelitis. No one is sure what caused it. She has been very lucky that she was diagnosed in a matter of days and her treatment has started. She is now in Children's Hospital in New Orleans and will have Therapy 3 hours per day. She is showing some improvement. She was coloring Saturday. Hope and faith is what we are depending on and a lot of prayers. My 7 year old granddaughter has just been diagnosed with transverse myelitis. No one is sure what caused it. She has been very lucky that she was diagnosed in a matter of days and her treatment has started. She is now in Children’s Hospital in New Orleans and will have Therapy 3 hours per day. She is showing some improvement. She was coloring Saturday. Hope and faith is what we are depending on and a lot of prayers.

]]> By: Joan Carterhttp://calitreview.com/11/comment-page-1#comment-93469 Joan Carter Sat, 17 Apr 2010 14:03:19 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-93469 I am approaching three years post acute attack of TM (T5). As a single-mom of a 10yr old daughter, my positive attitude and drive for professional success has kept me going. I regained ability to walk after approx. 10 days but spacticity and balance issues are problematic. I had been through the gradual increase of oral baclofen and at about 60mg, had realized depression even suicidal effects. I am on a lower dose now, while I know it's providing some relief, would prefer to be off it. I had a ITP trial 6 months ago, was hard to evaluate the benefits however. I am back to considering the pump as my frustrations with each labored step is increasing. Comforting to hear all the stories of those who share the horrific onset of symptoms. With tears rolling down my face as I read the articulate recollections, I have gained strength and thank you all for your contributions. God bless. I am approaching three years post acute attack of TM (T5). As a single-mom of a 10yr old daughter, my positive attitude and drive for professional success has kept me going. I regained ability to walk after approx. 10 days but spacticity and balance issues are problematic. I had been through the gradual increase of oral baclofen and at about 60mg, had realized depression even suicidal effects. I am on a lower dose now, while I know it’s providing some relief, would prefer to be off it. I had a ITP trial 6 months ago, was hard to evaluate the benefits however. I am back to considering the pump as my frustrations with each labored step is increasing. Comforting to hear all the stories of those who share the horrific onset of symptoms. With tears rolling down my face as I read the articulate recollections, I have gained strength and thank you all for your contributions. God bless.

]]> By: Lynnhttp://calitreview.com/11/comment-page-1#comment-90478 Lynn Tue, 23 Mar 2010 10:51:48 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-90478 In Sept 2006 I was at work and felt a strange sensation in my legs, I went to my GP straight away thinking I had a trapped nerve but the GP thought it could might be Guillaume Barrie Syndrome and said he would try and get me in to see a neurologist. At 5am that morning I woke up with the most incredible pain in my legs and arms and realised that even though there was this pain I was numb from the chest downwards. The emergency doctor was sent for who called an ambulance which took me to the nearest hospital they didn't like the look of what it was and then sent me to Newcastle General who deal a lot in neurological disorders. I had numerous tests MRI's and lumber punch and was diagnosed with acute TM and was told there was no treatment available so was released to go home to basically wait and see what would happen. When I got home I looked it up on the web and got upset and was scared but thanks to a good friend who kept me moving all the time I gradually started to walk albeit with a stick and over the next month made a vast improvement and soon didnt need a walking aid. When I returned to the hospital to see the Professor, who is one of few neurologists in England who know anything about the disease, he told me he had never seen anyone have it so bad make such a remarkable recovery and asked me what I had been doing. I told him how my friend insisted on making me walk A LOT and how I had kept moving as much as possible and perhaps a bit of luck came into play. I went back several times to see him and he remained interested in how I had made this progress with the only remaining problem being the "banding" which I have since found out is very common among TM sufferers. About a year later I suffered a relapse and it was then decided to hand me over to the MS consultant as the Professor felt they could help me more. I can only say that at my worst point both physically and emotionally I joined the TM Society and can only thank those kind people for all the support they gave me and information too as there seems so little available. All I can say to anyone who encounters this dreadful disease is be as informed as you can and don't ever stop moving, if you can that is. I am a lucky person I realise thank and for what reason I was spared, considering how bad my lesions were and how many they found, I have no idea but I count my blessings everyday and the MS isn't going to stop me either if TM didn't this one wont either. And for what its worth since being diagnosed I took up salsa and got a medal in it too, got engaged and celebrated my 50th birthday so to anyone who is feeling low and wondering if there is hope I'm living proof that there is. In Sept 2006 I was at work and felt a strange sensation in my legs, I went to my GP straight away thinking I had a trapped nerve but the GP thought it could might be Guillaume Barrie Syndrome and said he would try and get me in to see a neurologist. At 5am that morning I woke up with the most incredible pain in my legs and arms and realised that even though there was this pain I was numb from the chest downwards. The emergency doctor was sent for who called an ambulance which took me to the nearest hospital they didn’t like the look of what it was and then sent me to Newcastle General who deal a lot in neurological disorders. I had numerous tests MRI’s and lumber punch and was diagnosed with acute TM and was told there was no treatment available so was released to go home to basically wait and see what would happen. When I got home I looked it up on the web and got upset and was scared but thanks to a good friend who kept me moving all the time I gradually started to walk albeit with a stick and over the next month made a vast improvement and soon didnt need a walking aid. When I returned to the hospital to see the Professor, who is one of few neurologists in England who know anything about the disease, he told me he had never seen anyone have it so bad make such a remarkable recovery and asked me what I had been doing. I told him how my friend insisted on making me walk A LOT and how I had kept moving as much as possible and perhaps a bit of luck came into play. I went back several times to see him and he remained interested in how I had made this progress with the only remaining problem being the “banding” which I have since found out is very common among TM sufferers. About a year later I suffered a relapse and it was then decided to hand me over to the MS consultant as the Professor felt they could help me more. I can only say that at my worst point both physically and emotionally I joined the TM Society and can only thank those kind people for all the support they gave me and information too as there seems so little available. All I can say to anyone who encounters this dreadful disease is be as informed as you can and don’t ever stop moving, if you can that is. I am a lucky person I realise thank and for what reason I was spared, considering how bad my lesions were and how many they found, I have no idea but I count my blessings everyday and the MS isn’t going to stop me either if TM didn’t this one wont either. And for what its worth since being diagnosed I took up salsa and got a medal in it too, got engaged and celebrated my 50th birthday so to anyone who is feeling low and wondering if there is hope I’m living proof that there is.

]]> By: Kathttp://calitreview.com/11/comment-page-1#comment-89048 Kat Fri, 12 Mar 2010 20:47:48 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-89048 I was diagnosed with TM when I was 8 years old (I'm not 22, so 14 years ago) and none of my doctors had ever heard of it. All I remember was having trouble doing my homework (which at the time was "writing" different words and having neat handwriting) and my parents getting very frustrated with me thinking I was lazy. I also vaguely remember trying to walk down our hallway into my bedroom and I couldn't even make it 3 feet without having to hold onto something. I was brought to the doctor that night and was joking around about wanting to go watch TV in the hospital (right next door) and the doctor looked at me and said "Well, looks like you get to watch TV, we need to get you in there right now. Can you walk?" I stood up, and fell down. After an MRI the doctors still couldn't figure out what was going on and sent me down to the closest Children's hospital 2 hours away. I stayed there for 3 weeks with lots of daily tests. The paralysis in my legs lasted about 1 1/2 weeks and with a lot of PT I was able to regain the strength. I've always been curious about how/what caused this and no one was/has been ever able to explain it to me. I am now writing a research paper for college about TM and it's very interesting. Thank you for all of your stories. I was diagnosed with TM when I was 8 years old (I’m not 22, so 14 years ago) and none of my doctors had ever heard of it. All I remember was having trouble doing my homework (which at the time was “writing” different words and having neat handwriting) and my parents getting very frustrated with me thinking I was lazy. I also vaguely remember trying to walk down our hallway into my bedroom and I couldn’t even make it 3 feet without having to hold onto something. I was brought to the doctor that night and was joking around about wanting to go watch TV in the hospital (right next door) and the doctor looked at me and said “Well, looks like you get to watch TV, we need to get you in there right now. Can you walk?” I stood up, and fell down. After an MRI the doctors still couldn’t figure out what was going on and sent me down to the closest Children’s hospital 2 hours away. I stayed there for 3 weeks with lots of daily tests. The paralysis in my legs lasted about 1 1/2 weeks and with a lot of PT I was able to regain the strength. I’ve always been curious about how/what caused this and no one was/has been ever able to explain it to me. I am now writing a research paper for college about TM and it’s very interesting. Thank you for all of your stories.

]]> By: samhttp://calitreview.com/11/comment-page-1#comment-87766 sam Mon, 01 Mar 2010 11:34:50 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-87766 is it Possible TM patient getting married? is it Possible TM patient getting married?

]]> By: Melissahttp://calitreview.com/11/comment-page-1#comment-87244 Melissa Wed, 24 Feb 2010 18:02:52 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-87244 I had TM, after a very bad stomach virus in July of 2009, was hospitalized for 3 1/2 weeks and could not walk cough right, urinate or have bowel movements. I left the Hospital on 8/25, still unable to fully walk, after receiving Blood Plasma IV and 2 IV steroid treatments, and entered into rehab, on 9/25/09 I left rehab, and was able to walk again. It is now six months since I left the hospital, and I am 100% again. From the onset of my TM until I was able to fully walk again was about 1 1/2 months, but everyones TM is different it depends on the severity of how it comes on and unfortunately the damage it has left behind, I fortunately did not have any damage to the Spinal cord, I beleive I was one of the lucky ones. Good Luck to you all!!! I had TM, after a very bad stomach virus in July of 2009, was hospitalized for 3 1/2 weeks and could not walk cough right, urinate or have bowel movements. I left the Hospital on 8/25, still unable to fully walk, after receiving Blood Plasma IV and 2 IV steroid treatments, and entered into rehab, on 9/25/09 I left rehab, and was able to walk again. It is now six months since I left the hospital, and I am 100% again. From the onset of my TM until I was able to fully walk again was about 1 1/2 months, but everyones TM is different it depends on the severity of how it comes on and unfortunately the damage it has left behind, I fortunately did not have any damage to the Spinal cord, I beleive I was one of the lucky ones. Good Luck to you all!!!

]]> By: Meghanhttp://calitreview.com/11/comment-page-1#comment-86893 Meghan Mon, 22 Feb 2010 02:38:05 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-86893 My name is Meghan. I'm 16 have TM i got it about three and a half years ago and i had the back pain and it was the worst pain i've ever felt. I thought i pulled a muscle being at the beach all day. I went to bed and woke up with the morning Paralyzed from the chest down(T4). I just saw this online and i wanted to know how long you were unable to walk before you started walking again. Please Email me(: My name is Meghan. I’m 16 have TM i got it about three and a half years ago and i had the back pain and it was the worst pain i’ve ever felt. I thought i pulled a muscle being at the beach all day. I went to bed and woke up with the morning Paralyzed from the chest down(T4). I just saw this online and i wanted to know how long you were unable to walk before you started walking again. Please Email me(:

]]> By: sachinhttp://calitreview.com/11/comment-page-1#comment-78736 sachin Sat, 12 Dec 2009 18:54:02 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-78736 My cousin got this in 1991 and his lower part of body is numb and he cannot feel temperature, etc. and it is TM. We tried every possible thing and it improves to the extent that he can walk for short distance using walking frames but it detoriates too. Physically he is not that fit. We being in India have also tried Ayurveda (kottayam, Kerala) and it is combined with physiotherapy. I am again going back to Ayurveda alongwith meditation and hope it will help. My cousin got this in 1991 and his lower part of body is numb and he cannot feel temperature, etc. and it is TM. We tried every possible thing and it improves to the extent that he can walk for short distance using walking frames but it detoriates too. Physically he is not that fit.

We being in India have also tried Ayurveda (kottayam, Kerala) and it is combined with physiotherapy. I am again going back to Ayurveda alongwith meditation and hope it will help.

]]> By: Jessicahttp://calitreview.com/11/comment-page-1#comment-77394 Jessica Sat, 05 Dec 2009 04:25:09 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-77394 My nephew has TM and he got it when he was only 4 months old. So as you can guess he can't accurately describe any of his onset of problems. The doctors here did not act fast enough to really help him either. I feel so bad for him. I pray all the time for a cure. He is so precious and sweet about it all. He is currently in physical therapy now. Hope all of you get completely well and just keep praying about this condition. My nephew has TM and he got it when he was only 4 months old. So as you can guess he can’t accurately describe any of his onset of problems. The doctors here did not act fast enough to really help him either. I feel so bad for him. I pray all the time for a cure. He is so precious and sweet about it all. He is currently in physical therapy now. Hope all of you get completely well and just keep praying about this condition.

]]> By: Margiehttp://calitreview.com/11/comment-page-1#comment-75553 Margie Mon, 23 Nov 2009 19:39:23 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-75553 I was wondering if anyone could tell me if they had all kinds of movement in there legs when they had TM + can not bear weight yet. Rehab said they do not have an answer but mabe someone who had TM can. I can lift my legs laying down cross them when iam sitting ialmost want to get right up but i can not. its going on 5 months since the onset + i was paralized from the hips down. it was in the lumbar section. i am still num from the knees down sum light feeling though. I was wondering if anyone could tell me if they had all kinds of movement in there legs when they had TM + can not bear weight yet. Rehab said they do not have an answer but mabe someone who had TM can. I can lift my legs laying down cross them when iam sitting ialmost want to get right up but i can not. its going on 5 months since the onset + i was paralized from the hips down. it was in the lumbar section. i am still num from the knees down sum light feeling though.

]]> By: sylviahttp://calitreview.com/11/comment-page-1#comment-75176 sylvia Sat, 21 Nov 2009 00:01:12 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-75176 After reading so many of your experiences, Im so comforted in the knowing that not only is this terrible desease not exclusive to anyone, but for various reasons or following various events, can without warning strike. My back was severly injured in a car accident, and no one seemed to understand why 11 month later I was still in horrific pain, and ever increasing weakness until I awakened on a Tuesday morning unable to get out of bed.I thought I would die and trust me after a months hospital stay and a Neurologist calling me crazy, They diagnosed me with TM idiopathic. They found no desease that would cause such an onset, and the continued pain and disabilities has made me many many days want to give up. I dont. I have gone from being paralized to a wheel chair to a walker and now just my cane. The pain in my back, neck and shoulders have made me scream the blood of Jesus. Sometimes I am angry, I am often afraid. My life has completely changed and even how some deal with me has, but I am alive,my husband loves me and so do my God. May You have peace and comfort. After reading so many of your experiences, Im so comforted in the knowing that not only is this terrible desease not exclusive to anyone, but for various reasons or following various events, can without warning strike.
My back was severly injured in a car accident, and no one seemed to understand why 11 month later I was still in horrific pain, and ever increasing weakness until I awakened on a Tuesday morning unable to get out of bed.I thought I would die and trust me after a months hospital stay and a Neurologist calling me crazy, They diagnosed me with TM idiopathic. They found no desease that would cause such an onset, and the continued pain and disabilities has made me many many days want to give up. I dont. I have gone from being paralized to a wheel chair to a walker and now just my cane. The pain in my back, neck and shoulders have made me scream the blood of Jesus. Sometimes I am angry, I am often afraid. My life has completely changed and even how some deal with me has, but I am alive,my husband loves me and so do my God.
May You have peace and comfort.

]]> By: Jeffhttp://calitreview.com/11/comment-page-1#comment-74497 Jeff Mon, 16 Nov 2009 10:24:23 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-74497 I do agree with the ex naval officer above, try to stay positive, even though I was in the hospital and not able to walk for weeks I kept telling myself that I was going to walk out of the ICU the next day, hard to tell yourself that but I slowly did get better and didnt walk out, left in a wheelchair but I can walk today, again best of luck to everyone on here as no one knows what we went through. I do agree with the ex naval officer above, try to stay positive, even though I was in the hospital and not able to walk for weeks I kept telling myself that I was going to walk out of the ICU the next day, hard to tell yourself that but I slowly did get better and didnt walk out, left in a wheelchair but I can walk today, again best of luck to everyone on here as no one knows what we went through.

]]> By: Jeffhttp://calitreview.com/11/comment-page-1#comment-74496 Jeff Mon, 16 Nov 2009 10:15:35 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-74496 I had TM in 1990, and I was playing in AAA at the time for SD Padres, I went from the prime of my life to this disease, I feel sorry for all the people and their families that have had to go through this. I was very fortunate, maybe because I was in great physical shape at the time. I was flown from Las Vegas to Scripps Center in Lajolla, CA. They ran several tests, MRI, Lumbar puncture, blood, urine, all that and I had an ellavated protein level in my spinal fluid, this was the only thing that was off, otherwise I felt fine. The day of the first onset I had severe pain, I mean severe pain shooting down both my legs, felt like there was fire in my veins and then the numbess/paralysis took over, I could barely walk. I stayed in the hospital for about 30 days and then slowly got better, I have some numbness on the backside of my legs but overall I am very lucky. When this happened to me like some of you above years ago the internet wasnt here and the cases where so rare you couldnt talk to anyone that had it, I am glad I found this site, I pray and wish everyone on here the best of luck. Jeff I had TM in 1990, and I was playing in AAA at the time for SD Padres, I went from the prime of my life to this disease, I feel sorry for all the people and their families that have had to go through this. I was very fortunate, maybe because I was in great physical shape at the time. I was flown from Las Vegas to Scripps Center in Lajolla, CA. They ran several tests, MRI, Lumbar puncture, blood, urine, all that and I had an ellavated protein level in my spinal fluid, this was the only thing that was off, otherwise I felt fine. The day of the first onset I had severe pain, I mean severe pain shooting down both my legs, felt like there was fire in my veins and then the numbess/paralysis took over, I could barely walk. I stayed in the hospital for about 30 days and then slowly got better, I have some numbness on the backside of my legs but overall I am very lucky. When this happened to me like some of you above years ago the internet wasnt here and the cases where so rare you couldnt talk to anyone that had it, I am glad I found this site, I pray and wish everyone on here the best of luck.

Jeff

]]> By: Margiehttp://calitreview.com/11/comment-page-1#comment-73224 Margie Sat, 07 Nov 2009 18:56:24 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-73224 Iwoke up one Sat. morning this past July + felt alittle numbness in my legs + next thing i know was in ahopital with everyone looking at me wondering what happened to me. If it was not for 1 nerologist who called the shots +put me on steroids + ordered plasmapheresis idont think i would of had a chance. iam paralized from the hips down at that time after 2 weeks in the hospital went to Good Shepard rehab for a month started with some movement came home for a month with home care, now back to rehab as an out patiant its just 3months since it happened I have lots of movement cant weight bear yet but really working hard at rehab. bladder is getting under control. I will lose my job if idont get better my Jan. but getting better is my first goal. My husband takes care of me. thanks to him i fight harder to get better. Iwoke up one Sat. morning this past July + felt alittle numbness in my legs + next thing i know was in ahopital with everyone looking at me wondering what happened to me. If it was not for 1 nerologist who called the shots +put me on steroids + ordered plasmapheresis idont think i would of had a chance. iam paralized from the hips down at that time after 2 weeks in the hospital went to Good Shepard rehab for a month started with some movement came home for a month with home care, now back to rehab as an out patiant its just 3months since it happened I have lots of movement cant weight bear yet but really working hard at rehab. bladder is getting under control. I will lose my job if idont get better my Jan. but getting better is my first goal. My husband takes care of me. thanks to him i fight harder to get better.

]]> By: Peggyhttp://calitreview.com/11/comment-page-1#comment-63770 Peggy Tue, 25 Aug 2009 13:12:47 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-63770 I am an American living in the UK for close to thirteen years. My husband and I flew to NY for a 6 day holiday. On Friday, 13 March 2009, the third day of our trip, I woke as usual, showered, fixed breakfast in our hotel room and packed our lunch for a day out. Just before leaving the hotel, I began to experience pins and needles in my bottom. We both thought it was due to so much walking the two days prior and that it would pass. Well, it did not pass - in fact it got worse. An undescribable sensation was going down my thighs as we walked to the Metro. We made it Wall Street but by then the sensation was in my calves as well. I was finding it very difficult to stand and was depending on my husband for support. He hailed a cab to take us to the nearest ER - which was St Vincent's in Manhattan. I had to be literally dragged from taxi to ER as I had become paralyzed from the waist down - all this within 1-2 hours. In the ER, I was seen quite quickly by a neurologist who, after examining and questioning me, ordered an MRI expecting it to reveal either a herniated disc or a tumor at the base of the spine pressing on the nerves - in which case I was to expect surgery that evening. I had no bowel or bladder control and a catheter was put in place. The MRI did not show either of these. I was finally admitted to the neurology ward. Over the next 9 days, I had two further MRI's, a cardiology team, an infectious disease team, a lumbar puncture procedure, ECG, EKG, steroids by IV, anti-viral meds, etc.... One diagnosis was MS but confirmed. All negative results from lumbar puncture. After 10 days in St Vincent's, I was flown with a private nurse back to the UK. (Thank God for travel insurance.) Lucky for me I was accepted as a patient in The National Hospital for Neurology and Neurosurgery in London - one of the best in the world. Upon arrival in London, I was still unable to move my legs at all. An MRI was done the day I arrived which showed the damage was still active. MS was ruled out completely as my nerve damage was too low in the spine for MS and at age 58, too old. Diagnosis was made of severe TM due to a viral infection - T9 conus but involving cauda equina. (will never know what virus). I remained in this hospital for a further 7 weeks. After the first week, I was taught to use a slider board from bed to wheelchair; then progress to walking frame; then to arm crutches; and finally to walking sticks. I had 3 hours of physio and rehab each day, learning to walk, shower and dress independently. It has been a long, hard journey and I am not fully recovered yet. Each and every step is pure effort. The bottom of my bottom is still numb as are the backs of both legs and my left foot. I have pain, burning sensation in my feet 24/7. I have avoided any of the medications with dreadful side effects, i.e. Gabapentin. Just trying to get the pain to a tolerable level with Paracetamol (Tylenol). I continued private physio 3 times a week for several weeks and am now going once a week. My heart goes out to each and every fellow TM sufferer. No one else can understand just what we go through every single moment of every single day. I pray for a cure for this and more research into the causes. I am on my yellow brick road - a journey to recovery. Hope you are too. I am an American living in the UK for close to thirteen years. My husband and I flew to NY for a 6 day holiday. On Friday, 13 March 2009, the third day of our trip, I woke as usual, showered, fixed breakfast in our hotel room and packed our lunch for a day out. Just before leaving the hotel, I began to experience pins and needles in my bottom. We both thought it was due to so much walking the two days prior and that it would pass. Well, it did not pass – in fact it got worse. An undescribable sensation was going down my thighs as we walked to the Metro. We made it Wall Street but by then the sensation was in my calves as well. I was finding it very difficult to stand and was depending on my husband for support. He hailed a cab to take us to the nearest ER – which was St Vincent’s in Manhattan. I had to be literally dragged from taxi to ER as I had become paralyzed from the waist down – all this within 1-2 hours. In the ER, I was seen quite quickly by a neurologist who, after examining and questioning me, ordered an MRI expecting it to reveal either a herniated disc or a tumor at the base of the spine pressing on the nerves – in which case I was to expect surgery that evening. I had no bowel or bladder control and a catheter was put in place. The MRI did not show either of these. I was finally admitted to the neurology ward. Over the next 9 days, I had two further MRI’s, a cardiology team, an infectious disease team, a lumbar puncture procedure, ECG, EKG, steroids by IV, anti-viral meds, etc…. One diagnosis was MS but confirmed. All negative results from lumbar puncture. After 10 days in St Vincent’s, I was flown with a private nurse back to the UK. (Thank God for travel insurance.) Lucky for me I was accepted as a patient in The National Hospital for Neurology and Neurosurgery in London – one of the best in the world. Upon arrival in London, I was still unable to move my legs at all. An MRI was done the day I arrived which showed the damage was still active. MS was ruled out completely as my nerve damage was too low in the spine for MS and at age 58, too old. Diagnosis was made of severe TM due to a viral infection – T9 conus but involving cauda equina. (will never know what virus). I remained in this hospital for a further 7 weeks. After the first week, I was taught to use a slider board from bed to wheelchair; then progress to walking frame; then to arm crutches; and finally to walking sticks. I had 3 hours of physio and rehab each day, learning to walk, shower and dress independently. It has been a long, hard journey and I am not fully recovered yet. Each and every step is pure effort. The bottom of my bottom is still numb as are the backs of both legs and my left foot. I have pain, burning sensation in my feet 24/7. I have avoided any of the medications with dreadful side effects, i.e. Gabapentin. Just trying to get the pain to a tolerable level with Paracetamol (Tylenol). I continued private physio 3 times a week for several weeks and am now going once a week. My heart goes out to each and every fellow TM sufferer. No one else can understand just what we go through every single moment of every single day. I pray for a cure for this and more research into the causes. I am on my yellow brick road – a journey to recovery. Hope you are too.

]]> By: Maggiehttp://calitreview.com/11/comment-page-1#comment-63703 Maggie Tue, 25 Aug 2009 04:21:39 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-63703 I'm a TM success story. I was 44, diagnosed in March 2000, after experiencing the initial symptoms for nearly 9 days, while on the road with my business. I certainly have to say that if I had gotten sick at home, I wouldn't be here - but, I got sick near a good hospital, with a very savvy ER staff. Hats off to Borgess Medical in Kalamazoo, Michigan! After the third trip to the ER with a bladder infection, plus the paralysis, the neurologist on duty asked the RIGHT questions, instead of the expected series of wrong questions from other specialities. I got the MRI (two hours in the tube), and within twenty minutes, I was on my way to the ICU. Stayed there a week. Interesting experience, doing a physical inventory every hour, expecting improvement. And, got it. That toe twitch was a welcome sight! They wheeled me into the physical rehab, and once I learned what exercises were required, I decided to take charge of my recovery, exercising every muscle group I needed in order to walk again - even did pushups and situps twice a day - and walked out on my own power (no canes or crutch) in a week. Background helps. I am a Naval Officer (Active and Reserve), and have had considerable physical discipline, which steered my course, and kept me focused. And, I never did get scared - I asked questions, and stayed objective. As I said, it happened in March of 2000. By July of that same year, I was back drilling with my unit, fully functional, able to pass a physical readiness test (includes running), and was promoted in October. Other than not being able to fully feel temperature from the chest down (not debilitating - actually an advantage in hot weather), I was declared medically ready, and mobilized to the Persian Gulf in May 2001, mobilized to a different area January 2002, and am going out still again October of this year (2009) on another mobilization. Guys...if it happens - to a relative, a friend, an acquantance, YOU know what's going on...tell them: don't screw around with enduring stupid questions at an ER - and many ER doctors don't even know what questions to ask...tell them the neurologist needs to get involved, and TELL them it's likely TM. To those recovering: Positive attitude will do more for your recovery than you think. It's not just meds. Plus...take charge of your recovery - think ahead, during rehab - don't wait for other people to think for you, or move for you. Yeah, being incontinent sucks - but, there are solutions (pubovaginal sling is one). Above all: Don't whine. The more whining, the less people listen to you. One last thing - don't obsess about every little twinge being a recurrence...numbers support NOT getting a recurrence. That occasional body spasm (yes, I get them sometimes) - I walk it off. Really. GET ON WITH YOUR LIFE. It's still fun. I'm living proof. Take care. I’m a TM success story. I was 44, diagnosed in March 2000, after experiencing the initial symptoms for nearly 9 days, while on the road with my business.

I certainly have to say that if I had gotten sick at home, I wouldn’t be here – but, I got sick near a good hospital, with a very savvy ER staff. Hats off to Borgess Medical in Kalamazoo, Michigan!

After the third trip to the ER with a bladder infection, plus the paralysis, the neurologist on duty asked the RIGHT questions, instead of the expected series of wrong questions from other specialities.

I got the MRI (two hours in the tube), and within twenty minutes, I was on my way to the ICU. Stayed there a week. Interesting experience, doing a physical inventory every hour, expecting improvement. And, got it. That toe twitch was a welcome sight!

They wheeled me into the physical rehab, and once I learned what exercises were required, I decided to take charge of my recovery, exercising every muscle group I needed in order to walk again – even did pushups and situps twice a day – and walked out on my own power (no canes or crutch) in a week.

Background helps. I am a Naval Officer (Active and Reserve), and have had considerable physical discipline, which steered my course, and kept me focused. And, I never did get scared – I asked questions, and stayed objective.

As I said, it happened in March of 2000. By July of that same year, I was back drilling with my unit, fully functional, able to pass a physical readiness test (includes running), and was promoted in October.

Other than not being able to fully feel temperature from the chest down (not debilitating – actually an advantage in hot weather), I was declared medically ready, and mobilized to the Persian Gulf in May 2001, mobilized to a different area January 2002, and am going out still again October of this year (2009) on another mobilization.

Guys…if it happens – to a relative, a friend, an acquantance, YOU know what’s going on…tell them: don’t screw around with enduring stupid questions at an ER – and many ER doctors don’t even know what questions to ask…tell them the neurologist needs to get involved, and TELL them it’s likely TM.

To those recovering: Positive attitude will do more for your recovery than you think. It’s not just meds.

Plus…take charge of your recovery – think ahead, during rehab – don’t wait for other people to think for you, or move for you. Yeah, being incontinent sucks – but, there are solutions (pubovaginal sling is one). Above all: Don’t whine. The more whining, the less people listen to you.

One last thing – don’t obsess about every little twinge being a recurrence…numbers support NOT getting a recurrence. That occasional body spasm (yes, I get them sometimes) – I walk it off. Really. GET ON WITH YOUR LIFE. It’s still fun. I’m living proof.

Take care.

]]> By: Susanhttp://calitreview.com/11/comment-page-1#comment-57968 Susan Fri, 10 Jul 2009 09:24:46 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-57968 In July 2000 I had sudden onset TM. The areas affected on my spine were in the Thoracic Region, T1-T6. Symptoms included difficulty walking and rising from the seated positon and eventually difficulty voiding. Within hours I was unable to walk, void, sit up straight, roll over in bed and I was overwhelmed with fear. A patient was pulled out of the MRI to make room for me, 'the emergency'. He was furious. I will never be mad again for any inconvenience due to an emergency. I was in the hospital with 1000mg. Solu-Medrol Infusion x 5 days, then taper down with oral Prednisone. I remained hospitalized for 2 weeks with intense physical and occupational therapy. I was rolled in, but I walked out, due to the diligent care and oversight of bright doctors who were committed to my care. I now care for my 30yr. old daughter who has had 3 attacks of TM within the last 2 1/2 yrs. She is bedridden much of the time and my heart goes out to her. I am certain that God permitted me to experience TM in it's full fury so that I could be a compassionate and caring caregiver to my sweet daughter. In July 2000 I had sudden onset TM. The areas affected on my spine were in the Thoracic Region, T1-T6. Symptoms included difficulty walking and rising from the seated positon and eventually difficulty voiding. Within hours I was unable to walk, void, sit up straight, roll over in bed and I was overwhelmed with fear. A patient was pulled out of the MRI to make room for me, ‘the emergency’. He was furious. I will never be mad again for any inconvenience due to an emergency. I was in the hospital with 1000mg. Solu-Medrol Infusion x 5 days, then taper down with oral Prednisone. I remained hospitalized for 2 weeks with intense physical and occupational therapy. I was rolled in, but I walked out, due to the diligent care and oversight of bright doctors who were committed to my care. I now care for my 30yr. old daughter who has had 3 attacks of TM within the last 2 1/2 yrs. She is bedridden much of the time and my heart goes out to her. I am certain that God permitted me to experience TM in it’s full fury so that I could be a compassionate and caring caregiver to my sweet daughter.

]]> By: Leehttp://calitreview.com/11/comment-page-1#comment-53219 Lee Tue, 02 Jun 2009 13:27:19 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-53219 My father was stricken with this disease in 1974. Very rare at that time, no one knew at all how to treat it. He never regained his movement, remaining a C5 quad until he died in 2006. My father was stricken with this disease in 1974. Very rare at that time, no one knew at all how to treat it. He never regained his movement, remaining a C5 quad until he died in 2006.

]]> By: Kerrihttp://calitreview.com/11/comment-page-1#comment-52857 Kerri Sat, 30 May 2009 19:13:48 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-52857 Heidi - I so wish to talk to you. My son, Skylar, was diagnosed with TM at 6 months - right after getting his set of shots. We put him down for a nap and when we woke him up he couldn't move anything from the neck down. You're the first person I have found that has had this happen to someone they know as an infant. If it is the case with your little one that they had/have TM, I would like very much to talk to you. Feel free to contact me: ilovemysiamese@live.com Heidi – I so wish to talk to you. My son, Skylar, was diagnosed with TM at 6 months – right after getting his set of shots. We put him down for a nap and when we woke him up he couldn’t move anything from the neck down. You’re the first person I have found that has had this happen to someone they know as an infant. If it is the case with your little one that they had/have TM, I would like very much to talk to you.

Feel free to contact me: ilovemysiamese@live.com

]]> By: Kerrihttp://calitreview.com/11/comment-page-1#comment-52856 Kerri Sat, 30 May 2009 19:12:45 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-52856 Heidi - I so wish to talk to you. My son, Skylar, was diagnosed with TM at 6 months - right after getting his set of shots. We put him down for a nap and when we woke him up he couldn't move anything from the neck down. You're the first person I have found that has had this happen to someone they know as an infant. If it is the case with your little one that they had/have TM, I would like very much to talk to you. Also - Does anyone know of any help out there for us? I'm a 21 year old single mother - barely making over $10/hr - and financially this is killing me, but I don't know of any help out there for us other than SSI. Feel free to contact me: ilovemysiamese@live.com Heidi – I so wish to talk to you. My son, Skylar, was diagnosed with TM at 6 months – right after getting his set of shots. We put him down for a nap and when we woke him up he couldn’t move anything from the neck down. You’re the first person I have found that has had this happen to someone they know as an infant. If it is the case with your little one that they had/have TM, I would like very much to talk to you.

Also – Does anyone know of any help out there for us? I’m a 21 year old single mother – barely making over $10/hr – and financially this is killing me, but I don’t know of any help out there for us other than SSI.

Feel free to contact me: ilovemysiamese@live.com

]]> By: Shirleyhttp://calitreview.com/11/comment-page-1#comment-52332 Shirley Tue, 26 May 2009 18:29:19 +0000 http://calitreview.com//uncategorized/sudden-onset/#comment-52332 My husband was diagnosed in Jan 2009 with meningitis and finally after 3 months in the hospital they said it was TM. He was just turning 51. He's a T6 quadriplegic. He can walk with the aid of a walker but not for long because of multiple past knee surgeries. One thing different about him: he has this constant numb pain in both hands and feet. This has been very hard on him as well as myself and our daughter. Please pray for my family. My husband was diagnosed in Jan 2009 with meningitis and
finally after 3 months in the hospital they said it was
TM. He was just turning 51. He’s a T6 quadriplegic. He can walk with the aid of a walker but not for long because of multiple past knee surgeries. One thing different about him: he has this constant numb pain in both hands and feet. This has been very hard on him as well as myself and
our daughter. Please pray for my family.

]]>