transverse myelitis

[lottie221]

I have been diagnosised with TM until my plasma exchange I was numb from the waist down. Now I have some sensation. I was just given an ultra sound of the abdomen and it was painful I am wondering is this sensation or actual pain what do you think?

[lottie221]

everything always works out if we reconize it or not. I am ok now I am trying to find my own place. Children and grand children are ok for a while but enough is enough I hope to be able to purchase a home soon so keep me lifted up. take care of yourself and those lovely little men.

[OperaMBA]

Let me know if I need to send Doni over to give anyone the axe handle treatment!!!!

I am sorry about the insurance/job situation.   That has to make it difficult!

Richard
OperaMBA

[lottie221]

when the doctors did the original MRI there were previous lesions that were healed they dated them back to about 2001 when I was previously diagnosised with sciatica. Now there are new lesions that have formed under the original healed ones. This really makes you say HUMMMM. I was under a primary care at the start of the original onset I had insurance and benifits. Now I don't have a job or benifits hummmm. (lol) all the best to you and your family

[OperaMBA]

My one lesion is at T3.   They didn't find anything else in 2001 when this all "kicked off".

They thought that I had Guillain-Barre at first, but I was way atypical in presentation and duration.   I think the ultimate thought was a demyelinating virus/immune response in '01, akin to TM.

7 years and 3 episodes later, I am still no closer to an answer.

On the bright side - I'm older and wiser.   And, with some motivation from Shell, Doni and MANY others I have "taken the neurologists by the throat", in terms of dealing with my slip-shod medical treatment (note the absence of care).

You are in my prayers, Lottie.

Richard

[lottie221]

that was a difficult time for me i was in the hospital the first time it happend and later i was home and could not breath because my lesions on located on  C3&4 so that was a scary time for me. The problem they had with me is i am past the age for onset of ms. so that was a weird one. all of my children are grown and my grand children are catching up with their parents. all the best to you and your family

[lottie221]

TM is in close relation to the MS there are a few other stages of TM there are three more disorders in additon to the MS but I can't remember what they are right now but they progress up to MS there is a transvers myelitsis site that you can go on and read about others who have gone through this transformation. all the best

[OperaMBA]

Here is an excellent article on TM vis-a-vis MS...

w w w DOT myelitis.org/newsletters/newsletter4-2-02.htm

Remove the spaces and convert the DOT...

My first episode was an incomplete TM-like attack effecting my arms and legs.

Richard
OperaMBA

[lottie221]

do you have more info on the trial studies.

[Sarahsmom46]

You all can add me to the TM list.  I had an acute neurological event last May that most of my doctors have attributed to TM.  When I saw the MS doctor last month, I asked him about the relationship between TM and later developing MS.  He said that there are statistics that shows this relationship.  He even said that in some circumstances it may be considered the first episode of MS.  The NIH is doing a study to try to identify what triggers MS and one of the health issues that they are considering in their research is for people who have the TM diagnosis.

Like Lottie and Erin, my tests came back fairly normal but suspicious.  TM is supposed to be a one-time event and I don't know about you guys but I'm only about 75% recovered according to my neurologist.  I hope you guys are doing better.So, we will all learn eventually what course our bodies will take with this TM diagnosis.  

Julie

[MegCO]

Lottie and Erin-

I'm curious to see how much of a link you believe there is between TM and MS? I was recently diagnosed TM but all my tests came back negative for MS (i.e. no bands, no brain lesions, normal ranges on VEP, normal field of vision tests, and normal on the newer vision MS test). Just curious what your thoughts are on the link and maybe what your tests were initially for when you were diagnosed TM vs. MS.

Thanks!

[lottie221]

I was diagnosed in April all numbness has left except for the hands, I think the elevated enzynes are due to the large doses of Neurontin I take everyday. All my medications are to control spasms and pain. I basicially on maintance medications

[Erin0313]

Lottie,
I think that it is just sensation. I was diagnosed with TM 2 1/2 years ago and couldn't stand without help after sitting (no leg feeling).
I have a question for you - have you already been diagnosed with MS? I wasn't before or when I had the TM it took another year of progression and another round of spinal taps and MRI's.
Thanks,
   Erin