Oh, the Places Pam Goes - to Buffalo!

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

Oh, the Places Pam Goes - to Buffalo!

Postby pegmegrund » Sun May 23, 2010 6:44 pm

I was at BNAC last week to participate in their self-pay CCSVI testing, and decided it was't fair to hijack Ozarkcanoer's thread with my details. I started typing a post, and guess what? It turned into a blog!

Here is my first blog post, with details of my testing at BNAC:

http://theplacespamgoes.blogspot.com/

I'm still a little travel weary, so didn't even finish describing the whole trip.

If the blog post gets too long for you, the short version - my report shows that I meet 2 of the 5 CCSVI criteria!
Last edited by pegmegrund on Mon May 24, 2010 5:49 am, edited 1 time in total.
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Postby Cece » Sun May 23, 2010 10:20 pm

Congratulations! 8)
"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
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Postby sbr487 » Sun May 23, 2010 11:39 pm

Very well written.
I might be incorrect but it seems this is the first time I am seeing someone with spinal lesions w/o brain lesions. I am just curious to know the symptoms you have (specifically I am coming from fatigue ...)
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Postby pegmegrund » Mon May 24, 2010 5:12 am

sbr487 wrote:I might be incorrect but it seems this is the first time I am seeing someone with spinal lesions w/o brain lesions. I am just curious to know the symptoms you have (specifically I am coming from fatigue ...)


Hi-

There are a few of us out here! I think it is a less common lesion picture for MS.

My MS symptoms (in no particular order) are numbness in my toes which can sometimes move to my leg, left leg weakness and just a bit of foot drop, bladder hesitancy, fatigue, heat intolerance, spasticity in leg muscles - mainly quadriceps, and clonus (or myoclonus) where my legs jerk when I'm at rest - sort of a restless leg thing, but a bit different. The only cognitive symptom I notice is a lack of finding the right word sometime.

Of those, fatigue, heat intolerance and the leg jerks are the biggies.

Hope that helps-

Pam
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Postby mshusband » Mon May 24, 2010 5:16 am

Pam ... and they found occlusion in your jugulars at Buffalo?

VERY INTERESTING.

What about your Azygous? I don't believe Buffalo tests that ... but instead of searching, though I'd just ask the source.

What are your plans from here?
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Postby pegmegrund » Mon May 24, 2010 5:28 am

mshusband wrote:Pam ... and they found occlusion in your jugulars at Buffalo?

VERY INTERESTING.

What about your Azygous? I don't believe Buffalo tests that ... but instead of searching, though I'd just ask the source.

What are your plans from here?


Yes - it is very interesting, isn't it?

The MRV was clear - very boring looking, in fact, when compared to others where there are lots of curly collaterals. I don't have those, and there is no stenosis reported on MRV.

The Doppler shows an abnormal valve in the right IJV and slight stenosis, and also deep cerebral vein reflux.

My azygous is the big question. They don't test it, as it is difficult to image on MRV. When I origially read Zamboni's paper that discussed 'types' of CCSVI my initial thought was 'I bet I have an azygous issue.'

I have been in touch with a few IRs in my area, and am hoping that I can get an appt to review images and talk about next steps. While the test results gave me some answers, there are still many more questions.

edited to correct typos
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Postby mshusband » Mon May 24, 2010 5:36 am

Peg ... check your PM.
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Postby wobbly » Mon May 24, 2010 5:44 am

as now we r softball buddies we r similar in our MS / i have 1 very old lesion on my brain - 4 as last spine mri big lesions on my cord / pam cool blog / pam and darren u guys rock / STAY STRONG ALL --PEACE 8) 8)
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Postby Trish317 » Mon May 24, 2010 12:17 pm

So, when they did the MRV it showed no stenosis but they found the problems with the Doppler?

I'm asking because my darling man saw his neuro this morning and got the results from an MRV he had on May 5. She told him it was normal....nothing wrong. I had told him to expect that because many people have false negative results. I know if I hadn't told him that, he would have been devastated.

We're going forward to get him tested and treated somewhere where they actually know CCSVI.
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Postby pegmegrund » Mon May 24, 2010 7:32 pm

wobbly wrote:as now we r softball buddies we r similar in our MS / i have 1 very old lesion on my brain - 4 as last spine mri big lesions on my cord / pam cool blog / pam and darren u guys rock / STAY STRONG ALL --PEACE 8) 8)


Our MS lesions are similar, and we didn't even talk about that while guarding the cooler? Are you my long, lost big brother? :lol: I always wanted a big brother!
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Postby pegmegrund » Mon May 24, 2010 7:39 pm

Trish317 wrote:So, when they did the MRV it showed no stenosis but they found the problems with the Doppler?


Hi Trish -

Yes - that's correct. The MRV of the neck is clear, and the Doppler showed a valve issue and slight stenosis. The deep cerebral veins showed reflux on the Doppler. So... where is it? That's the new question. I'm guessing that I have some sort of issue in the azygous as well, but that remains to be seen...

Good luck to you and your husband!

Pam
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Postby pegmegrund » Mon May 24, 2010 8:14 pm

I forgot to mention one important part of the program that I participated in at BNAC - they are tracking the data, and I'm part of a study. The data will be published. I'm so happy that I was able to add to the pool of data.

If you'd like to participate in the BNAC CCSVI database study, call: 716-859-7040.

More blog posts to come... I have to tell you about the honey bees!
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Postby Trish317 » Mon May 24, 2010 9:14 pm

Thank you, Pam!
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Postby pegmegrund » Tue May 25, 2010 5:37 am

Trish - you're welcome. I thought I'd also mention (although you likely know this) that others have had Doppler tests that appear to be fine, but the MRV shows issues...
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Postby pegmegrund » Tue May 25, 2010 7:36 pm

I just completed the second half of the Buffalo story on my blog, which you'll find here:

http://theplacespamgoes.blogspot.com/

It's less about CCSVI testing and more about honeybees...

Enjoy!
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