Update from NIH: I do have stenosis, I don't have MS...

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

Postby ozarkcanoer » Wed Nov 25, 2009 6:05 pm

patientx wrote:We've all heard the reports that, on autopsy, some people have been shown to have MS lesions in their brains while never developing MS. I would think, given this, at least some of the control subjects should have venous stenoses. Maybe in a larger sample size, such as the Buffalo study, this will be true.


patientx... There was one TIMS member with MS who took her daughter with her when she went to Stanford for the procedure with Dr Dake. He decided to scan the daughter too, and lo and behold the daughter had stenosis and lesions too !!!!

There was also some scuttlebutt posted on this board from someone who participated in the Buffalo study that two of the "controls" had lesions and stenosis.

I don't think we get MS when we are diagnosed, but we HAVE MS and then are diagnosed. So I think people with MS-like lesions on autopsy really did have MS ?? I guess it's unclear since they don't fit the Mc Donald criteria.
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Postby cheerleader » Wed Nov 25, 2009 6:13 pm

Marc-
This is a CT scan of a patient of Dr. Mark Haacke's. This young man had bony structures at C1 blocking his jugulars. Like you-
He also does not have MS...docs don't know what he has, but he's not well.

Image

I urge you to put the NIH in touch with Dr. Haacke regarding your case- as you mention, they have worked with him before. Here's Dr. Haacke's website:
http://www.ms-mri.com/
Have you ever been tested using Dr. Haacke's SWI MRI protocol for iron deposition in gray matter, Marc?
wishing you more answers-

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby marcstck » Thu Nov 26, 2009 1:42 am

Thanks, cheer.

I think I may have misstated the detail about the "bony structure" in relation to my stenosis. I'm not sure that the bony structure has caused the stenosis, but my stenosis is in a very small area between two bony structures, making it very difficult, if not impossible, to stent. At least that's what I've been told...

I have forwarded the NIH all of the info regarding Dr. Haacke, have not yet received any response.

I believe they did do an SWI study on me, not sure the results...
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Postby bluesky63 » Fri Nov 27, 2009 8:57 am

Hi Marc. Amazing stuff. I'm wondering, are you still seeing our friend the kingly doctor? :-) I haven't been for a bit and I wondered what his take on all this would be.

The point about MS misdiagnosis is important. To completely oversimplify things, a person presents with a set of neurological symptoms and signs, testing is done more or less thoroughly, and an MS diagnosis is what's left when everything else has been ruled out. So the commonly quoted misdiagnosis rate is about 5 to 10 percent. And the vast majority of people do not get a thorough diagnostic workup.

I'm so glad to "see" you here and see you getting such thorough care. In the end, obviously, what we call something is less important than getting an effective therapy. I really hope your medical team finds an answer and an effective therapy quickly.

All the best -- :-)
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Postby marcstck » Fri Nov 27, 2009 1:22 pm

bluesky63 wrote:Hi Marc. Amazing stuff. I'm wondering, are you still seeing our friend the kingly doctor? :-) I haven't been for a bit and I wondered what his take on all this would be.

All the best -- :-)


yes, I am still seeing our Dr., and as a matter of fact have an appointment with him next Saturday. He's been in touch with the NIH, and is not in total agreement with all of their findings. I haven't had a chance to speak with him in detail about it, which I will do next Saturday, but so far he's not willing to back off of the MS diagnosis, and doesn't think the stenosis is relevant.

Again, this could all change after my full appointment with him a week. I've been supplying his office with all of the relevant research materials regarding CCSVI, and they've been relatively receptive...
Last edited by marcstck on Fri Nov 27, 2009 4:23 pm, edited 1 time in total.
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Postby LR1234 » Fri Nov 27, 2009 2:30 pm

So Marc, What are you going to do if they decide the stenosis is significant and may be contributing to your current situation?

Do you feel that you will accept no treatment for it if that is the NIH's best advice?
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Postby Sharon » Fri Nov 27, 2009 3:59 pm

but my stenosis is in a very small area between two bony structures, making it very difficult, if not impossible, to stent. At least that's what I've been told...


Marc, my daughter's right IJV was plastered against the bone structure at the C-1 level. Dake was able to get a stent inserted. It was a small stenosis at about 1" in length.

Good luck at your next appointment - keep us updated.

Sharon
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Postby marcstck » Fri Nov 27, 2009 4:28 pm

LR1234 wrote:So Marc, What are you going to do if they decide the stenosis is significant and may be contributing to your current situation?

Do you feel that you will accept no treatment for it if that is the NIH's best advice?


If the NIH finds that the stenosis is relevant, I don't think they'll advise no treatment. I'm not sure what treatment they would advise, but open neck surgery is not out of the question.

If the NIH feels that the stenosis is not relevant, then I'll have some difficult decisions to make. It will be hard to watch myself continue to wither away, knowing that I have stenosis in my jugular. Given the recent disaster involving radeck, though, I'm not sure that I'd be willing to undergo Dake's stenting procedure, and I'm pretty sure that balloon angioplasty wouldn't do me any good. Quite the conundrum...
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