Hi, Louise; That was a very useful and interesting explanation of what we have, I think. I also have read that TM is one of many types of conditions within a large spectrum of similar CNS disorders.
Actually, I am mostly interested in symptoms and outcomes. And considering that so many others were completely paralyzed for life from TM, I consider myself very fortunate. At first it appeared to be a clear case of RRMS. I had two separate attacks which rendered my left side almost useless, in January 9th, 2010, and then in February 16th, during which time I got some better, but not completely better. Previous to that I had felt fatigued doing laps around the hockey rink. I used to do about 45 minutes of straight laps around the hockey rink in afternoons, but suddenly I felt too tired to do even ten minutes of them. My muscles just wouldn't recover and my ankles became very weak, especially the left one. Meanwhile, I was having so much trouble seeing out of my left eye that I sold the TV, since I couldn't watch it anymore. I saw an ophthalmologist, who declared everything OK. So I didn't know why I couldn't focus it. Then on the morning of 23 April, after having a really queer and bad backache and stiff neck and headache the night before, feverish and all, just after lecture I felt bad sick and asked reception to call a cab; I couldn't drive home at all. And in just a few minutes more, I went into convulsions in front of everyone, and couldn't sit or control my arms, legs or torso. (Here were all these Muslim women deciding what to do to get me back up and onto a chair, discussing whether they could touch an un-related man and so forth. Really comical!) After that event, the neuro declared it to be TM, idiopathic. They found a lesion on the brain stem. I have been having these attacks of convulsions and of being whacked out mentally every few days ever since. I am one of those who am convinced by all available evidence that these big events in our lives, while they may be accidental and dependent on the changes and chances of life, happen to us for a reason. A wise man, Gill Stokes, Dean of boys at my school, told me when I was 15, that we were given a body in which to grow a soul. And when the soul has matured as much as possible, it issues forth from the body into the spiritual world. We admit that during sleep we are freed from our bodies, and we travel to places and do things that after the passage of many years appear before our eyes, just as in our dream. So with death, how could it be imagined that we do not pass completely into that other world? And when you see a sleeping or unconscious person, he or she looks dead, except for the breathing. Whatever is in there that gives life to the body looks to be missing, right? So my job now is to learn whatever I can from having this condition. All the Prophets and Messengers of God, in whatever divinely revealed Book gives account, explain that pain and hardship are what enable the soul to mature. My previous good-health life gave me a lot of time and money-wasting pleasures, NASCAR and NHRA, hockey and hockey fights. I won't reveal too much, but I didn't watch these things, buy the hats and jackets, cruise around the streets in my supercharged Mustang, arrayed with stickers of the products I bought to make the car go faster and sound better—I didn't do these things for my spiritual development, let's just say. Feeling the thrill of physical strength, executing a nice turn or speed stop on the ice, getting good seats at the game—I would have to give these things up eventually anyway, right?—when I got too old? So, it is a little early. They would all end up as just memories, no matter what. I actually feel freer now on some level. I look upon my disease and its limitations on health and movement as sort of putting me in a quasi-monastic state, wherein I can concentrate on more important things than before, if I so choose. That is, the opportunity has been given to me; time will tell how well I made use of it. Thank you so much for generously sharing your learning about TM. It has made things easier. Dalton From: Louise Croyden <[email protected]> Date: Sat, 13 Aug 2011 22:03:19 -0400 To: Dalton Garis <[email protected]>, john snodgrass <[email protected]>, <[email protected]>, <[email protected]> Subject: Re: [TMIC] Fwd: MY STORY Hi Dalton, I'm really confused because, as far as I know (and my neurologist concurs), TM is not a disease unto itself but an attack of inflammation that is caused by something else -- which could be a disease such as MS, Lupus, West Nile Virus... or they may not be able to find a cause and the attack is then labelled ideopathic. Quite a large number (can't remember the %) of the ideopathic group have had a viral or bacterial infection prior to the inflammatory attack. In my case they could not determine a definitive cause but they think it may have been triggered by a sinus infection I'd had a couple of weeks before. Somehow something got through the brain/blood barrier and attacked the spinal cord at T12/L1. Of course, the immune system doesn't help as it identifies a problem which it tries to fix so it attacks the same area making the situation worse. My neuro agrees that TM is not a disease so we are not living with a disease called Transverse Myelitis (Transverse simply means across the spinal cord and Myelitis means inflammation) but with the aftermath of that inflammatory attack on our spinal cords, i.e., neuropathic pain and everything that includes. So, when you say you "caught" the Indian form of TM, that is completely contrary to everything I've been told during the past six years. I don't write in often because everyone talks about living with this disease called TM and I believe that's because many doctors really don't understand the process themselves and don't explain it well enough to their patients. Let's face it when we have lived through this traumatic situation, and are now suffering on a daily basis, it is difficult to sort it all out. I've come up with an analogy of driving to work one day and having a car accident that injured my spinal cord. I say that now I'm living with the results of that day when I was struck down with the paralysis. That seems to put it into perspective for my family and friends. Luckily, I'm no longer paralyzed but I was unable to continue working and can't travel or do a lot of the things I used to enjoy or hoped to enjoy in retirement. I'm one of the "walking wounded". I have a lot of deficits and various types of neuropathic pain, stiffness, etc. I think the worst thing for me is the debilitating weakness that consumes the core of my body. There is no pattern -- it comes suddenly and leaves when it wants to. Then I pick myself up and carry on. I call it "riding the wave". For some unknown reason, for the past week I've had horrible muscle spasms that have attacked both my legs (mainly during the night) from my toes and including my calves and hamstrings. I'm hoping it will pass soon. I have even been hit with them during my exercises in the morning. I work out about 1 and 1/2 hours a day to keep going and a spasm even hit my right calf when I was on the recumbent bike and I had to stop. That has never happened before. I've read all your e-mails over the months with interest and have felt very sorry for what you are going through. It sounds like you have good support from your family and friends and I hope you can keep "riding the wave" with courage. Regards. Louise > > ----- Original Message ----- > > From: Dalton Garis <mailto:[email protected]> > > To: john snodgrass <mailto:[email protected]> ; [email protected] ; > [email protected] > > Sent: Saturday, August 13, 2011 4:15 PM > > Subject: Re: [TMIC] Fwd: MY STORY > > > > > > My Neurologist says I happened to catch the Indian variety of TM?we have so > many Indians and other South Asians working here as expats. The Indian > variety is actually new and as yet not fully described. The Japanese form is > what afflicts most, unfortunately, since it most always paralyzes and comes > on very quickly. > > > > I am very happy nonetheless. These lost says are OK for me now, since I am > in my 60's and have no physical goals or burdens to deal with, now that I can > no longer work as Associate Professor and lecturer. > > > > Never mind; lots of stuff to write, study and think about. And I got a > mandolin to learn to play. My brother plays and we will make music together, > as we did when we were all kids. That's what you did in those days, we made > our own music. My mother sang, Dad played his mandolin, my sister played the > piano, and my brother was on the guitar. > > > > So, what's the problem? I was just curious if anyone else had these > continuous and on-going spells. > > > > Thanks, all, > > > > Dalton > > > > Dalton H. Garis, Ph.D > (no longer) Associate Professor, > Commodity Price Behavior > > The Petroleum Institute > P.O. Box 2533, Umm al Nar > Abu Dhabi, United Arab Emirates > Office: +971-02-607-5070/5297 > Mobile: +971-50-668-5760 > > New York: (718) 271-2738 > > > > From: john snodgrass <[email protected]> > Date: Sat, 13 Aug 2011 12:15:37 -0700 (PDT) > To: <[email protected]>, <[email protected]> > Subject: Re: [TMIC] Fwd: MY STORY > Resent-From: <[email protected]> > Resent-Date: Sat, 13 Aug 2011 12:17:11 -0700 > > > > it is documented that TM can come on in a short time or over a period of > time. mine came over a period of time but nonetheless when the time came I > went to the hospital!but with mostly the same symptoms as others with the > banding in the side and the tingling and loss of coordination and > well,,,,,stuff. > it is a scary feeling when you are walking and it is as if the earth is > moving away from your feet!and when cold feels hot and hot feels cold. > > --- On Sat, 8/13/11, [email protected] <[email protected]> wrote: > >> >> From: [email protected] <[email protected]> >> Subject: [TMIC] Fwd: MY STORY >> To: [email protected] >> Date: Saturday, August 13, 2011, 11:41 AM >> >> >> >> >>> >>> >>> From: [email protected] >>> To: [email protected] >>> Sent: 8/11/2011 5:38:07 P.M. Eastern Daylight Time >>> Subj: Fwd: MY STORY >>> >>> >>> >>> >>>> >>>> >>>> From: [email protected] >>>> To: [email protected] >>>> Sent: 8/7/2011 11:19:36 A.M. Eastern Daylight Time >>>> Subj: MY STORY >>>> >>>> HI ANNIE I READ YOUR STORY AND WAS THINKING I SHOULD TELL MINE. I AM NOW >>>> 76 AND HAVE HAD TM FOR 10 YEARS. I AWOKE ONE MORNING AND GOT OUT OF BED >>>> AND MY LEGS WOULD NOT HOLD ME. I JUST MADE IT TO THE PHONE TO CALL MY >>>> HUSBAND AND SAID SOMETHING IS HAPPENING TO ME. HE WAS HOME BEFORE THE EMS >>>> . THEY TOOK ME TO THE HOSPITAL BUT NO ONE NEW WHAT WAS WAS WRONG, I COULD >>>> NOT MOVE AT ALL. I WAS SO SCARED AND SO WERE MY FAMILY.. THEY THEN SENT >>>> ME TO YALE HOSPITAL. THEY TOOK ALL TEST AND THEN SAID IT WAS TM. WHO KNEW >>>> WHAT TM WAS. I WENT TO GAYLORE FOR REHAB AND AFTER A MONTH I STARTED TO >>>> MOVE MY ARMS BUT WITH PAIN. THATS HOW FAR I GOT. I AM NOW IN A WHEEL CHAIR >>>> . MY PAIN IS UNDER CONTROL AS BEST IT CAN BE. I HOPE YOU WILL KEEP TRYING >>>> TO TAKE CARE. MY PRAYERS ARE WITH YOU. I HAVE A WOUNDERFUL HUSBAND THAT >>>> TAKES CARE OF ME SO I AM BLESSED. MARIE
