Janice; I can function normally for spurts of time, but no stamina in the muscles at all. My lower legs and lower arms are hit with constant aching and feel as if they were filled with hot lead.
My spine is very sore now with many different pains. My diaphragm and upper stomach area is burning and squeezing all the time. I cant get comfortable anymore, no matter how I sit, recline or lie down. The biggest problem is with the attacks of spasticity. They are overall convulsions affecting all my muscles and causing me to arch my back and legs backwards, then forwards, pinning my head aagainst my chest and leaving me with no control over arms, legs and speech. They ate almost epileptic fits, and likely caused by brain and spine lesions. I take Epanutin for this, which is an anti-convulsive medication given to epileptics. It works a little but the spastic qattacks can come at any time. I will feel it in my voice as I try to talk and become halting in speech. Then the back arches and the arms go flying upwarrds. This can last for 20 minutes or 6 hours, one convulsion after another. When it is finished with me all my muscles and backbones ache and giv e me a lot of pain. But I manage somehow and I am happy. Life is all about solving complications and problems, so, we get good at it. I must stop now, as both my eye focusing and my fingers are quitting on me. Kind regards, Dalton Garis Abu Dhabi/New York On 11/6/10 2:22 AM, "Janice Nichols" <jan...@centurytel.net> wrote: > Do you mind my asking what are you able to do? Were your arms affected and > how did it leave you with walking/not walking? > Janice > > From: Laura Beaudin <mailto:laura.beau...@gmail.com> > Sent: Thursday, June 10, 2010 11:43 AM > To: Janice Nichols <mailto:jan...@centurytel.net> ; tmic-l...@eskimo.net > Subject: Re: [TMIC] > > All my docs and therapists are on the Spinal Cord Injury Unit of our rehab > hospital...definitely qualified. It sucks, but sometimes the best efforts > don't work. I was on this unit as an inpatient for 6 weeks last summer, they > were not able to get much back so the time ended up being spent on how to > adjust to changes and become independent in spite of it. > > Transverse Myelitis IS a Spinal Cord Injury...just not a traumatic one (ie, > not caused by an accident). > > Laura > > http://practical-homeschooling.org > www.laurascoolstuff.com <http://www.laurascoolstuff.com> > > > > On Thu, Jun 10, 2010 at 10:34 AM, Janice Nichols <jan...@centurytel.net> > wrote: >> >> >> I am getting definite improvement with PT. My pain management doc >> recommended a PT guy that specializes with damaged spines (like us). He >> knows >> >> what he is doing. We are taking it very slow because of the severe back >> arthritis I have and the myelitis. I also do my exercises at home in >> between sessions. >> >> Can you get a PT especially recommended by your doc because of our special >> problem? The hamstring problem is definitely from myelitis. >> >> Janice >> >> >> >> From: Laura Beaudin <mailto:laura.beau...@gmail.com> >> >> Sent: Thursday, June 10, 2010 11:14 AM >> >> To: Janice Nichols <mailto:jan...@centurytel.net> >> >> Subject: Re: [TMIC] >> >> >> >> >> >> Ditto...more bruising would be normal (and often is) if you have decreased >> sensation. As for hamstrings, mine are shortening and despite PT, I can't >> get them flexible again. >> Laura >> >> http://practical-homeschooling.org >> www.laurascoolstuff.com <http://www.laurascoolstuff.com> >> >> >> >> >> On Thu, Jun 10, 2010 at 9:04 AM, Janice Nichols <jan...@centurytel.net> >> wrote: >> >>> >>> >>> Also the baclofen! Good luck and keep in touch in New York. >>> Are you going to live there now? >>> >>> Janice >>> >>> >>> >>> >>> >>> From: Dalton Garis <mailto:malugss...@gmail.com> >>> >>> Sent: Wednesday, June 09, 2010 11:44 PM >>> >>> To: Janice Nichols <mailto:jan...@centurytel.net> ; tmic-list@eskimo.com ; >>> Leslie Garis <mailto:lga...@mindspring.com> ; Garis, Brooks (Darien, CT) >>> <mailto:brooks_ga...@ml.com> >>> >>> Subject: Re: [TMIC] >>> >>> >>> I haven¹t; >>> >>> But I was in very heavy labor employment before returning to get a PhD at >>> aged 35, with lots of broken bones, back fusions, hardware, the works. So, >>> I wouldn¹t notice anyway. >>> >>> As to the hamstring, also, no. For me the spasticity and convulsive >>> attacks when I try to speak during stressful situations is absolutely the >>> biggest problem. And no one¹s heard of that. But I read about this being >>> a well documented effect of TM, that is, spasticity in some form, on the >>> Johns Hopkins website. I also have uncooperative legs and hands a lot of >>> the time. >>> >>> But I can¹t keep my left foot up while walking now, so I wear western boots >>> with big heels. They allow me to walk without the need for a foot brace. >>> >>> Here¹s hoping I don¹t get spastic in the airport or on the plane so it >>> doesn¹t get me grounded or thrown off the plane today on my flight back to >>> NYC!!! Hey, just increase the Lyrica, right? >>> >>> Dalton >>> Abu Dhabi/New York >>> >>> >>> >>> On 10/6/10 8:23 AM, "Janice Nichols" <jan...@centurytel.net >>> <http://jan...@centurytel.net> > wrote: >>> >>> >>>> >>>> Got a couple of questions: >>>> >>>> 1. Have you noticed more bruising on affected areas of TM than you had >>>> before TM? >>>> >>>> >>>> 2. Have any of you had problems with your hamstring since TM? >>>> >>>> Janice >>>> >> > >
