Re: [TMIC] New developments
Hey, all; I just spent from 9:00 AM to 3:00 PM spazzed out, with no control of my arms, legs, trunk, voice or facial movements. The spine between the shoulder blades was burning all day, and every time I tried to move or do anything I would lose control and couldn¹t even talk. In fact attempting to talk caused the whole body to spaz. I have no idea what started it, except that I went skating yesterday and then spent most of the rest of the day tutoring my favorite subject to a willing student, the economic implications of many divine teachings. This was not one of my epileptic-like attacks which just started recently, where it starts in the head like a storm, mood changes and other things occur and is physically over quite soon. This was just a pure spasticity event. Consciousness was not altered at any time. A very nice lady who works nearby came to stay with me. She knows medical massage learned from her father who practiced medicine in an isolated Philippine village. She massaged my scalp, face, back and hands, and no doubt it helped to calm the spasticity. God bless her! You might recall my telling you all when it had been 16 days without any symptoms. Now the spasticity attacks are back, along with this new epileptic attack which takes days to recover from. Those started about one month ago and were very different from the outset from the spasticity attacks I had before. In fact, even though I termed the spasticity attacks ³seizures,² because they were all over and left me helpless, I now know that they were not seizures. I know because now I get real seizures of the epilepsy type. They may only last 20-30 minutes but are far more upsetting. Consciousness is whacked, the sense of where and when is really bent, and the mood changes totally. There is an aura before if it comes on slowly, but not if induced by getting out of breath or from strobing or flashing lights and images (I don¹t watch TV anymore and CRT screens are a no-no). After the seizure there are feelings of bad depression lasting for about 4-6 hours. I never get those after the spasticity attacks now, but I did before except not too badly. Maybe the TM opened some gateway to the brain so that besides the expected spasticity attacks, now these partial epileptic fits are added to the mix. Or maybe the old attacks were a combination of both spasticity and seizure, but have now diverged into distinct types, one purely physical and the other an epileptic type. A doctor told me that if the epileptic seizure involves the temporal lobe where emotions are then it would cause the mood changes. My current neurologist has no clue about any of this, so I am seeking a dedicated epilepsy doctor, since, by definition, anything more than a one-time seizure directly associated to some event such as a stroke, accident, etc. is termed ³epileptic.² Any thoughts? Dalton Garis Abu Dhabi, UAE From: john snodgrass jcs...@yahoo.com Date: Fri, 17 Sep 2010 17:24:43 -0700 (PDT) To: em...@telephonelady.com Cc: transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] New to TM Resent-From: tmic-list@eskimo.com Resent-Date: Fri, 17 Sep 2010 17:24:44 -0700 that is so classic. i remember the morning i decided it was time to go to the Dr. when i got out of bed my whole right side was numb. top of my head to the bottom of my right foot was numb. when i walked i too had to look at where i was going because it felt like the floor or steps was moving away from my feet when i steped on them. took a shower before Dr visit and was worried because thwe water was so cold. it was hitting my left leg. i put my had in it and it was hot! i turned the cold water only on and it felt hot on my left leg. my Dr too thought i was in the process of having a stroke so she sent me to ER. as things would have it there was a neurologist in the Er that day walking past and was able to diagnose me quickly. he has several TM patients and they seam to be doing much better than me. that makes me angry,not at him but at TM. then again theres the 33% rule. you can read about it in the info you search for on the web. i learned about it at ninds website Transverse Myelitis Fact Sheet http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyeli tis.htm some people like this one,some dont. we all judge ourselves in our wants and dont wants but never one another. we have to bear our own burdens but at the same time bear one anothers burdens. in the greek language that word is defined in more than one way,one way has to do with the burden in your own mindthe pain and disfunctions of the body. I cant change your mind.facts are facts,hubby hurts! another way is a burdon of the heart. i can encourage and exhort you with lovong careing words that may help you along. words fitly spoken are like apples made out of gold in like a water picture made out of silver. thats worth quite a lot! sure wish your hubby would
Re: [TMIC] New developments
thoughts? overwhelmed! From: Dalton Garis malugss...@gmail.com To: john snodgrass jcs...@yahoo.com; em...@telephonelady.com Cc: transverse myelitis tmic-list@eskimo.com Sent: Sat, September 18, 2010 8:26:50 AM Subject: Re: [TMIC] New developments Hey, all; I just spent from 9:00 AM to 3:00 PM spazzed out, with no control of my arms, legs, trunk, voice or facial movements. The spine between the shoulder blades was burning all day, and every time I tried to move or do anything I would lose control and couldn’t even talk. In fact attempting to talk caused the whole body to spaz. I have no idea what started it, except that I went skating yesterday and then spent most of the rest of the day tutoring my favorite subject to a willing student, the economic implications of many divine teachings. This was not one of my epileptic-like attacks which just started recently, where it starts in the head like a storm, mood changes and other things occur and is physically over quite soon. This was just a pure spasticity event. Consciousness was not altered at any time. A very nice lady who works nearby came to stay with me. She knows medical massage learned from her father who practiced medicine in an isolated Philippine village. She massaged my scalp, face, back and hands, and no doubt it helped to calm the spasticity. God bless her! You might recall my telling you all when it had been 16 days without any symptoms. Now the spasticity attacks are back, along with this new epileptic attack which takes days to recover from. Those started about one month ago and were very different from the outset from the spasticity attacks I had before. In fact, even though I termed the spasticity attacks “seizures,” because they were all over and left me helpless, I now know that they were not seizures. I know because now I get real seizures of the epilepsy type. They may only last 20-30 minutes but are far more upsetting. Consciousness is whacked, the sense of where and when is really bent, and the mood changes totally. There is an aura before if it comes on slowly, but not if induced by getting out of breath or from strobing or flashing lights and images (I don’t watch TV anymore and CRT screens are a no-no). After the seizure there are feelings of bad depression lasting for about 4-6 hours. I never get those after the spasticity attacks now, but I did before except not too badly. Maybe the TM opened some gateway to the brain so that besides the expected spasticity attacks, now these partial epileptic fits are added to the mix. Or maybe the old attacks were a combination of both spasticity and seizure, but have now diverged into distinct types, one purely physical and the other an epileptic type. A doctor told me that if the epileptic seizure involves the temporal lobe where emotions are then it would cause the mood changes. My current neurologist has no clue about any of this, so I am seeking a dedicated epilepsy doctor, since, by definition, anything more than a one-time seizure directly associated to some event such as a stroke, accident, etc. is termed “epileptic.” Any thoughts? Dalton Garis Abu Dhabi, UAE From: john snodgrass jcs...@yahoo.com Date: Fri, 17 Sep 2010 17:24:43 -0700 (PDT) To: em...@telephonelady.com Cc: transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] New to TM Resent-From: tmic-list@eskimo.com Resent-Date: Fri, 17 Sep 2010 17:24:44 -0700 that is so classic. i remember the morning i decided it was time to go to the Dr. when i got out of bed my whole right side was numb. top of my head to the bottom of my right foot was numb. when i walked i too had to look at where i was going because it felt like the floor or steps was moving away from my feet when i steped on them. took a shower before Dr visit and was worried because thwe water was so cold. it was hitting my left leg. i put my had in it and it was hot! i turned the cold water only on and it felt hot on my left leg. my Dr too thought i was in the process of having a stroke so she sent me to ER. as things would have it there was a neurologist in the Er that day walking past and was able to diagnose me quickly. he has several TM patients and they seam to be doing much better than me. that makes me angry,not at him but at TM. then again theres the 33% rule. you can read about it in the info you search for on the web. i learned about it at ninds website Transverse Myelitis Fact Sheet http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm some people like this one,some dont. we all judge ourselves in our wants and dont wants but never one another. we have to bear our own burdens but at the same time bear one anothers burdens. in the greek language that word is defined in more than one way,one way has to do with the burden in your own mindthe
Re: [TMIC] New developments
Re: [TMIC] New developmentsBoy, I sure hope those doc's can get ahold of some reason for this. We knew you had been miserable the last few months with the seizures, but this is just too much.Keep us up on what will/has been done for you and if it helps.God bless you! Janice From: Dalton Garis Sent: Saturday, September 18, 2010 7:26 AM To: john snodgrass ; em...@telephonelady.com Cc: transverse myelitis Subject: Re: [TMIC] New developments Hey, all; I just spent from 9:00 AM to 3:00 PM spazzed out, with no control of my arms, legs, trunk, voice or facial movements. The spine between the shoulder blades was burning all day, and every time I tried to move or do anything I would lose control and couldn't even talk. In fact attempting to talk caused the whole body to spaz. I have no idea what started it, except that I went skating yesterday and then spent most of the rest of the day tutoring my favorite subject to a willing student, the economic implications of many divine teachings. This was not one of my epileptic-like attacks which just started recently, where it starts in the head like a storm, mood changes and other things occur and is physically over quite soon. This was just a pure spasticity event. Consciousness was not altered at any time. A very nice lady who works nearby came to stay with me. She knows medical massage learned from her father who practiced medicine in an isolated Philippine village. She massaged my scalp, face, back and hands, and no doubt it helped to calm the spasticity. God bless her! You might recall my telling you all when it had been 16 days without any symptoms. Now the spasticity attacks are back, along with this new epileptic attack which takes days to recover from. Those started about one month ago and were very different from the outset from the spasticity attacks I had before. In fact, even though I termed the spasticity attacks seizures, because they were all over and left me helpless, I now know that they were not seizures. I know because now I get real seizures of the epilepsy type. They may only last 20-30 minutes but are far more upsetting. Consciousness is whacked, the sense of where and when is really bent, and the mood changes totally. There is an aura before if it comes on slowly, but not if induced by getting out of breath or from strobing or flashing lights and images (I don't watch TV anymore and CRT screens are a no-no). After the seizure there are feelings of bad depression lasting for about 4-6 hours. I never get those after the spasticity attacks now, but I did before except not too badly. Maybe the TM opened some gateway to the brain so that besides the expected spasticity attacks, now these partial epileptic fits are added to the mix. Or maybe the old attacks were a combination of both spasticity and seizure, but have now diverged into distinct types, one purely physical and the other an epileptic type. A doctor told me that if the epileptic seizure involves the temporal lobe where emotions are then it would cause the mood changes. My current neurologist has no clue about any of this, so I am seeking a dedicated epilepsy doctor, since, by definition, anything more than a one-time seizure directly associated to some event such as a stroke, accident, etc. is termed epileptic. Any thoughts? Dalton Garis Abu Dhabi, UAE From: john snodgrass jcs...@yahoo.com Date: Fri, 17 Sep 2010 17:24:43 -0700 (PDT) To: em...@telephonelady.com Cc: transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] New to TM Resent-From: tmic-list@eskimo.com Resent-Date: Fri, 17 Sep 2010 17:24:44 -0700 that is so classic. i remember the morning i decided it was time to go to the Dr. when i got out of bed my whole right side was numb. top of my head to the bottom of my right foot was numb. when i walked i too had to look at where i was going because it felt like the floor or steps was moving away from my feet when i steped on them. took a shower before Dr visit and was worried because thwe water was so cold. it was hitting my left leg. i put my had in it and it was hot! i turned the cold water only on and it felt hot on my left leg. my Dr too thought i was in the process of having a stroke so she sent me to ER. as things would have it there was a neurologist in the Er that day walking past and was able to diagnose me quickly. he has several TM patients and they seam to be doing much better than me. that makes me angry,not at him but at TM. then again theres the 33% rule. you can read about it in the info you search for on the web. i learned about it at ninds website Transverse Myelitis Fact Sheet http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm some people like this one,some dont. we all judge ourselves in our wants and dont wants
