Transverse Myelitis and CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Transverse Myelitis and CCSVI

Postby Helevitia » Thu Jul 15, 2010 8:58 am

I wrote this in FlashHack's post, but it got buried quickly amongst the "chatter" :D

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 :D 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
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Talk to TMrox

Postby MarkW » Thu Jul 15, 2010 2:42 pm

Hello Helevitia/Dave,
Send a private message to TMrox, she has been de-stenosed with good effect on her TM.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Helevitia » Thu Jul 15, 2010 6:51 pm

Thanks Mark. in fact, I have talked with her and have been following her story.

Cheers,
Dave :)
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Postby ikulo » Thu Jul 15, 2010 9:49 pm

Helevitia,

just out of curiosity, is there any other significant difference between TM and MS, besides just the location of the lesions? For example, I think Devic's Disease has been differentiated from MS because Devics doesn't implicate T Cells (i think). Wasn't sure if there was anything similar with TM.

Thanks!
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Postby Helevitia » Fri Jul 16, 2010 10:15 am

ikulo wrote:Helevitia,

just out of curiosity, is there any other significant difference between TM and MS, besides just the location of the lesions? For example, I think Devic's Disease has been differentiated from MS because Devics doesn't implicate T Cells (i think). Wasn't sure if there was anything similar with TM.

Thanks!


The big significant difference is that TM doesn't progress. Usually after the first initial onset, no more relapses, though we continue to have residual effects and symptoms for the rest of our lives. There is something called Recurring TM, but that almost seems like MS to me, but I'm not sure.
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