Question for those with CCSVI: Did you have TM before MS?

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

Question for those with CCSVI: Did you have TM before MS?

Postby TMrox » Wed Jun 02, 2010 10:14 am

Do you know any MS patient (preferably with CCSVI) who was first diagnosed with Transverse Myelitis?

I got Transverse Myelitis (TM) in Dec 2008. I was diagnosed with CCSVI and had a balloon angioplasty two months ago.

My TM symptoms have very much improved since then. I no longer have daily headaches or fatigue. My spasms and hypersensitivity have gradually faded away.

All my MRIs show that I have TM and not MS. Fact that makes me believe TM might also be linked to CCSVI.

TM is a similar condition to MS, except that demyelination occurs only at one point in the spinal cord and not in the brain. Although, TM symptoms can be very similar to those of MS.

TM patients can develop MS. Medical literature is unclear about the exact risk of developing MS but some studies suggests that the risk ranges from 15% to 80%.

I've informed all the doctors involved in CCSVI trials about my case. To make the link between TM and CCSVI clearer, I'm looking for MS with CCSVI patients who might have been first diagnosed with TM and later on developed MS.

Your help will be very much appreciated :D .

You can find more about my case at:
http://www.myelitis.org/forum/viewtopic.php?f=78&t=4921
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm

Advertisement

Postby BamBAM » Wed Jun 02, 2010 9:55 pm

Hi TmRox

This is AMAZING!!! I have read your posts on the TM board and you have replied to some of my posts ( bchambers ) , I just had my 1 year anniversary of my TM attack, I was told by my Neoro that I was CIS and had an 80% chance of having another attack and it turning into MS, I have been reading and listening to everything I can find out CCSVI and wondering how it might relate to something like TM now I know, I am so happy for you, I have been comptemplating getting tested and have been going back and forth because I dont have a definite DX of MS but now I think I will just get tested, Thank you for your post you have given me hope

Peace, Brian
Last edited by BamBAM on Wed Jun 02, 2010 10:36 pm, edited 1 time in total.
Its not about the disability, Its about the ability!
User avatar
BamBAM
Family Member
 
Posts: 25
Joined: Sun Dec 20, 2009 4:00 pm

Postby Cece » Wed Jun 02, 2010 10:04 pm

this jumped out at me from this link:
http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm
What causes transverse myelitis?

Researchers are uncertain of the exact causes of transverse myelitis.

We run into "uncertain causes" and "don't know how this medication works, but it seems to work" constantly in MS!

Glad to hear you're feeling better!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby mangio » Wed Jun 02, 2010 10:42 pm

http://crystalangel6267.webs.com/mystory.htm
a lady with secondary progressive and transverse myelitis
User avatar
mangio
Family Elder
 
Posts: 288
Joined: Thu Dec 31, 2009 4:00 pm

Postby HappyPoet » Thu Jun 03, 2010 4:31 am

Hi,

I was not first diagnosed with TM, but here's my TM story:

RRMS = 10 yrs (might be turning SP).

Four years ago, a huge attack resulted in a TM diagnosis with a lesion, T5 - T6.

Two years later, an even bigger attack resulted in a "longitudinally-extensive" lesion, T5 - T9.

[For a time, NMO, neuromyelitis optica (aka Devic's) was looked at.
NMO = ON + TM. But in the end, it was thought I have too many brain lesions for NMO.]

In February of this year, I was diagnosed with CCSVI (plus, I also have intracranial venous deformities).

So, I believe both MS and TM (and maybe even NMO?) are related somehow to CCSVI.

Hope this helps,
~HP
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 3:00 pm

Postby MS_mama » Thu Jun 03, 2010 6:18 am

your TM attack could have just been the first attack of MS... because TM attacks are part of MS (and NMO, etc.). In other words, you don't have idiopathic TM (unknown cause), you have TM as a part of MS. This is what I have. My first lesions were due to TM but I went on to develop a brain lesion and I have the banding in my CSF. Dx=MS, not TM alone. But certainly I think that given the possibility that a person with TM alone could also have MS, CCSVI is a strong possibility.

Happy Poet, did they do the antibody test for NMO on you? Just wondering because NMO is slight consideration in my case, but I don't have ON and so I am not being tested for NMO yet. If vision probs come up, I will have the antibody test. Plus as far as I remember Buffalo did find a few NMO pts that did have CCSVI.
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
User avatar
MS_mama
Family Elder
 
Posts: 107
Joined: Mon Nov 09, 2009 4:00 pm

Postby TMrox » Thu Jun 03, 2010 6:34 am

BamBAM wrote:Hi TmRox

I just had my 1 year anniversary of my TM attack, I was told by my Neoro that I was CIS and had an 80% chance of having another attack and it turning into MS


Hello Brian,

thanks for your post on the myelitis and this site. I feel that I'm not the only crazy TM people looking into CCSVI now. You also give me hope!

I'm gathering references of studies which have seriously looked into the risk factors of TM turning into MS. I'm afraid that there are not many.

Keep in touch :P ,
Rox
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm

Postby TMrox » Thu Jun 03, 2010 6:49 am

MS_mama wrote:your TM attack could have just been the first attack of MS... because TM did they do the antibody test for NMO on you?


Hi MS_mama,

Thanks so much for your reply. I also belive that there is a strong possiblitity that TM is linked to CCSVI.

I have had three MRI scans and a spinal tap and so far there is no evidence of MS. No o-bands or lesions in brain, just my old TM lesion in c3-c5.

My neurologist was convinced that my TM was behaving unusual as I started having daily headaches and continue with strong spasms.

Then I was tested for NMO twice. A year ago, and six months ago. Both tests came back negative and test were done in different labs.

I saw a neurologist a couple of weeks ago. He was aware of the Buffalo findings and suggested me to be tested for the NMO antibody for a third time.

I have not had any problems with my eyes or evidence of a newer attack so I do not think I'll be doing the third test for NMO any time soon.

Take care :D
Rox
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm

Postby TMrox » Thu Jun 03, 2010 7:06 am

HappyPoet wrote:I believe both MS and TM (and maybe even NMO?) are related somehow to CCSVI.


Hi Happy Poet,

Thansk for sharing your experience. Wow, this shows that CCSVI is not just about MS. I'm starting to feel less isolated.

I hope that clinical trials also consider NMO and TM cases. I know that Buffalo university included some people with NMO. But as far as I know TM was not included.

Fingers crossed we all get answers soon.

Many thanks :wink:
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm

TM

Postby tazbo » Thu Jun 03, 2010 7:13 am

I had my first (and only) bout of TM 15 years ago. I awoke 1 day and I was numbed from my mid-chest to my toes. I had little feeling as to weather water was warm or cold and hardly felt the touch of the water. This sensation lasted for over a year then subsided. I had evoked potentials, an m.r.i., had now heavy l'hermettes in my neck and was diagnosed with M.S. I am wondering also if CCSVI is going to be present. Thx for your info
tazbo
Family Member
 
Posts: 92
Joined: Sun Dec 06, 2009 4:00 pm
Location: Canada

Postby TMrox » Fri Jun 04, 2010 9:53 am

Hi Tazbo :D ,

By any chance, did you have o-bands when first diagnosed with TM or you did not have a spinal tab?

My doc said that having o-bands increases the chances of evolving to MS. I do not have o-bands, or ON. My evoked potentials were normal. So finding out that I had CCSVI was a bit of a shoker.
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service