This Is MS Multiple Sclerosis Community: Knowledge & Support

This was a huge decision for my husband and I as I never have been diagnosed with ms. In over a 30 year period I have had only 3 known flare-ups and have been in one for a year this time. They were never able to quite figure out what was wrong with me but I was pretty sure it was ms since my first symptom was nystagmus with fatigue. I didn't know that way back then but 12 years later with my 2nd flare-up I heard that was a common symptom. This time around I went to a top notch ms specialist and he didn't seem to think it was ms.
I learned of ccsvi but didn't qualify for any studies without the diagnosis. Tried locally but not much there and managed to get on a couple lists that said they may be able to see me without the diagnosis.
I wanted to get to the bottom of this and Bulgaria offers all the testing with or without diagnosis.
I was a little surprised of the stenosis % I had.
95% blockage in the IRJ, 70% in the ILJ and 80% in the azygous.
The procedure was done yesterday and they said it is a good flow, not perfect but a good flow.
Not noticing much yet but lack of sleep for a week (2 hours last night) might play a role in that.
I didn't get Dr. Petrov, but the Dr. I had seemed very confident so therefor I was also.
There is a language barrier but not as much as I thought there would be.
I was warned that the procedure is painful from another patient, and it was somewhat, but it was bearable and I didn't need anything for the pain.
Overall, a good experience so far!

Kathy

Kathy,

Congratulations on your successful procedure. I am becoming more and more convinced that CCSVI may be a condition in its own right.

I understand the folks in the Transverse Myelitis group are looking to this to help them too. (http://www.myelitis.org/forum/viewtopic.php?f=78&t=4921)

The folks in Italy declared it so: http://www.mschristian.org/msc/index.php/articles/from-the-web/41-msrc-latest-ms-news/6015-ccsvi-recognised-as-an-independent-vascular-condition-by-italian-health-authorities

Keep us updated on your results.

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Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10

So very happy for you, you aren't the first non-diagnosed person to test positive for CCSVI and get treated. Good call, I think anyone with that level of stenosed veins would want to get fixed immediately. Did you do angio or stents or both? Please keep us posted on how you are doing. I remember when I first heard that nystagmus word, sounded like a death sentence but I was sitting on a hospital bed without the internet or a dictionary lol.

To echo gothic, yes this may be an intertwined condition, separate but running alongside with whatever the immunity is doing. Any surgery will tire you out just from the psychological aspect, let alone traveling a long ways to a foreign country. Rest easy, keep us posted on where you are at in the journey, good bad or otherwise...

Mark.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Kathy,

Congratulations.

I was in a similar boat. No diagnosis of MS when the first attack hit; it was attributed to other causes -- including unrequited love and overworking. It is a difficult diagnosis to make, apparently.

If a "perfect" stenosis score in the jugulars is 200, you ranked pretty high: 95% plus 70% is 165.

Please continue to keep us posted as to your progress.

I forgot to mention, all ballooning and no stenting so hopefully they stay open!

Kathy