Transverse Myelitis and CCSVI
Posted: Thu Jul 15, 2010 8:58 am
I wrote this in FlashHack's post, but it got buried quickly amongst the "chatter"
Here is wrote I wrote:
FlashHack,
Thanks for posting your story. I have Transverse Myelitis. For those that don't know, TM is similar to MS in where we get an initial onset of symptoms. Generally we don't get lesions in our brain but on our spine and usually only one, or in my case, no lesions. Most of us recover to some degree, 1/3 recover mostly or 100%, 1/3 recover some, and another 1/3 don't recover at all. I am fortunate enough to be one of the "walking wounded" that has recovered mostly.
I was in a wheelchair for 4 months, then to a cane for another 4-6 months. My residual symptoms include leg burning(nerve pain), bladder and bowel problems, balance issues, spasicity,slight clonus, weak calves and some other minor issues here and there. I get exacerbations from time to time, but nothing too serious. Luckily I have lived a decent life with minimal TM symptoms and I still work full time. It has been 17 years as of July 6th.
A percentage(I don't the exact number, I want to say 20%, but I don't know) of people with TM go on to have MS.
So your story is extremely interesting to me because you talk about having a significant blockage in the azygos vein and your biggest lesions are in your spine. All of your symptoms you describe are the major symptoms for TM sufferers.
The general thinking is that the Liberation Treatment might not help TMers because we don't have brain lesions and fixing the jugular veins won't do anything, but with the azygos vein, it gives me renewed hope. As far as I know, only one person who was diagnosed to have TM has gotten the Liberation Treatment and she seems to be doing spectacular. Thanks for posting your findings and thoughts. I have posted this information over at the TM forums for others to see.
I have been lurking around this site for several weeks after I found out about the liberation treatment. It's been amazing to read about what has been going on. It would be even more amazing to find out at some point that this could possibly help us TMers too. It would be awesome to be able to go poop normally again I would also love to get rid of the burning pain and stop taking medication. Anyhoo, I will just sit and watch for a while and see where all of this goes.
I wish you all great recovery, thank you...
Dave
Here is wrote I wrote:
FlashHack,
Thanks for posting your story. I have Transverse Myelitis. For those that don't know, TM is similar to MS in where we get an initial onset of symptoms. Generally we don't get lesions in our brain but on our spine and usually only one, or in my case, no lesions. Most of us recover to some degree, 1/3 recover mostly or 100%, 1/3 recover some, and another 1/3 don't recover at all. I am fortunate enough to be one of the "walking wounded" that has recovered mostly.
I was in a wheelchair for 4 months, then to a cane for another 4-6 months. My residual symptoms include leg burning(nerve pain), bladder and bowel problems, balance issues, spasicity,slight clonus, weak calves and some other minor issues here and there. I get exacerbations from time to time, but nothing too serious. Luckily I have lived a decent life with minimal TM symptoms and I still work full time. It has been 17 years as of July 6th.
A percentage(I don't the exact number, I want to say 20%, but I don't know) of people with TM go on to have MS.
So your story is extremely interesting to me because you talk about having a significant blockage in the azygos vein and your biggest lesions are in your spine. All of your symptoms you describe are the major symptoms for TM sufferers.
The general thinking is that the Liberation Treatment might not help TMers because we don't have brain lesions and fixing the jugular veins won't do anything, but with the azygos vein, it gives me renewed hope. As far as I know, only one person who was diagnosed to have TM has gotten the Liberation Treatment and she seems to be doing spectacular. Thanks for posting your findings and thoughts. I have posted this information over at the TM forums for others to see.
I have been lurking around this site for several weeks after I found out about the liberation treatment. It's been amazing to read about what has been going on. It would be even more amazing to find out at some point that this could possibly help us TMers too. It would be awesome to be able to go poop normally again I would also love to get rid of the burning pain and stop taking medication. Anyhoo, I will just sit and watch for a while and see where all of this goes.
I wish you all great recovery, thank you...
Dave