This Is MS Multiple Sclerosis Community: Knowledge & Support

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My name is not really Johnson. MSed up since 1993

Interesting - vertigo & dizziness was my first presenting symptom.

But then MRI & Lumbar Puncture met McDonald criteria for MS. So, if Dr. Zamboni is correct, I may have a stenosis preventing blood flow out of the brain to the heart, but if this article is correct, I may also have an inner ear problem restricting blood flow to the brain! How mind boggling is that.

It's strange - this CCSVI discovery has been the most bitter-sweet, paradoxical discovery for so many of us. It offers great hope and yet many of us do not currently (hope this will change) have access to the testing or to doctors like Dr. Simka, who I guess is too overwhelmed to respond to my many emails.

Frustrated, but trying to just learn.

selkie

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I bumped this up because I found it to be very interesting as another facet of the whole CCSVI/MS puzzle. I believe, further, that it ties in with Karl, MD's reference to vasculitis, and my ensuing query about systemic infections, and (shudder), sunwest's reference to 'knowing what caused my MS'.

In looking back, I have always pin-pointed an "ear infection" that I picked up in an isolation tank... odd, because isolation tanks have very high salinity (no pathogens ought to survive). That ear infection has plagued me since, and I am now essentially deaf in that ear - though I have a screaming, six-tone tinnitus there. I have asked over and over, if this infection could be the root of my MS. When I have a "flare up" in this ear, the site where my Wisdom Teeth used to be gets quite inflamed, and I get a sore throat and tongue on that side. An MS "exacerbation" usually follows.

Anyone else?

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My name is not really Johnson. MSed up since 1993

Johnson...
I think you have something here. Bacterial infections are endothelial disrupters, and can certainly make stenosis worse. However, no doc will say this "caused" your MS.

The following is my opinion...and I'm not a doc. Have you ever tried long term antibiotics (minocycline/doxy)? Might be worth a try for you. Every MS story will be different...the connection is venous stenosis and reflux of blood, but what triggers relapses/makes stenosis worse will be different for each individual. Jeff's trigger was high altitude and lower oxygen, which happens to alot of folks when they move to Colorado and then get diagnosed with MS. Every MS patient has a story-
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Indeed, cheerleader, I believe that we all do have a story, and that re-inforces my idea that MS is a spectrum dis-order - with concomitant varied aspects of presentation.

It is interesting that you mention the anti-biotics; most MDs that I have crossed paths with are reticent about accepting ideas of systemic infection - Lyme Disease being a primary suspect in my neck of the woods. There was a "local" Dr. prescribing extreme doses of anti-biotics for 'clinically diagnosed Lyme Disease', but he has since given/lost his license to practice. I have sourced another Dr. dealing with Lyme/MS locally, but have not had the oomph to make contact yet - partly because I think that he might be one to think "out-of-the-box for CCSVI screening and treatment, but "fear" that he might be hung up on the Lyme connection...

Perhaps a key to further investigation of CCSVI/MS is the aspect of endothelial "disruptors". I have a feeling that Doctorri Zamboni might already be on to this. We now know that H. pylori causes ulcers of the stomach, and oral bacteria has a further link to coronary-vascular disease, so why not so with CCSVI/MS?

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My name is not really Johnson. MSed up since 1993

Johnson,
Very interesting. During my first MS attack I had vertigo.
I also have complained (without any help or explanation from my doctors) about a swelling of the roof of my mouth before a worsening of my MS symptoms.
I knew I would be getting worse as soon as the swelling and pain in my mouth would begin. It always coincided with my MS getting worse.

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Yup. In Bologna, Dr. Z and his team listed a group of endothelial disrupters they are currently studying in relation to exacerbating pre-existing stenosis- it included EBV, cpn (bacteria), smoking, obesity, saturated fats, heavy metals, stress and toxins. I've long felt that these disrupters are responsible for the waxing and waning of flares for RRMS patients.

My Jeff's personal fav disrupter is stress...his flares would start when he was working too hard, or under a tight deadline. He also couldn't take high altitudes (low oxygen.)

Some people find remission of MS with antibiotics, diet, supplements, exercise...and then they write books or "sell" their protocol online, and it works for some, but not others. Because there are a multitude of endothelial disrupters, and the stenosis and reflux continues to crank along, underneath, MS will continue to damage the brain/spine. I think this is why MS has been so confounding for researchers, MS patients paths are so variable, and why there have been so many paths of study that have lead to nowhere.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Interesting, gadolinium always "sets me off" within 48 hours, some kind of strange symptom rears its head. Isn't that considered a heavy metal? Delivered straight into my bloodstream.

TB tests set me off - that is an antigen. (Did it twice before I really learned my lesson - never again).

I never felt better than when on antibiotics (broad spectrum) when having a root canal. I went back and asked her for more. She politely declined to treat my MS, as any good endodontist should lol. Problem is as usual, finding someone to prescribe such things. I tried contacting my sis's lupus doctor, as he is into long term protocols for treating that, no dice there either.

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

Mark,
If you look on the antibiotic forum here, you will find some people go to Vanderbilt University for treatment with abx. See Notasperfectasyou's log.
My husband tends to get worse after a UTI or after a cold/flu and stress...that's about all I can think of.

Just please don't forget to replenish your gut flora with acidophilus, bifidus, etc., when using anti-biotics. Muy importante!

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My name is not really Johnson. MSed up since 1993

I had terrible vertigo & dizziness for weeks when I was 21, more than 10 years before I was diagnosed. I got vertigo again a year later when pregnant, but haven't had any vertigo since.

I don't have any recollection of ear infections as a child or young adult.

Interesting...

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