Hey; Sorry for all that un-asked-for philosophy earlier. Actually, I had another attack when I went to the bank today, and had to have someone help me home and back up to my bed in the flat. Couldn't get my arms and legs to do what I wanted. And my face, too, got all contorted. And when your face begins looking funny to people, then you get treated a lot differently.
Dalton From: Louise Croyden <louisecroy...@cogeco.ca> Date: Sat, 13 Aug 2011 22:03:19 -0400 To: Dalton Garis <malugss...@gmail.com>, john snodgrass <jcs...@yahoo.com>, <tmic-list@eskimo.com>, <deer...@aol.com> 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:malugss...@gmail.com> > > To: john snodgrass <mailto:jcs...@yahoo.com> ; tmic-list@eskimo.com ; > deer...@aol.com > > 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 <jcs...@yahoo.com> > Date: Sat, 13 Aug 2011 12:15:37 -0700 (PDT) > To: <tmic-list@eskimo.com>, <deer...@aol.com> > Subject: Re: [TMIC] Fwd: MY STORY > Resent-From: <tmic-list@eskimo.com> > 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, deer...@aol.com <deer...@aol.com> wrote: > >> >> From: deer...@aol.com <deer...@aol.com> >> Subject: [TMIC] Fwd: MY STORY >> To: tmic-list@eskimo.com >> Date: Saturday, August 13, 2011, 11:41 AM >> >> >> >> >>> >>> >>> From: deer...@aol.com >>> To: tmic-list@eskimo.com >>> Sent: 8/11/2011 5:38:07 P.M. Eastern Daylight Time >>> Subj: Fwd: MY STORY >>> >>> >>> >>> >>>> >>>> >>>> From: deer...@aol.com >>>> To: sthrnbll...@yahoo.com >>>> 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
