This Is MS Multiple Sclerosis Community: Knowledge & Support

Normally, I don't have much spasticity in my legs. But if I get very stressed (like at the dentist getting a cavity filled, or watching a really scary movie), or if I get real cold real fast, my right leg gets so stiff I can barely work it. As soon as I become less stressed, or I get out of the cold, the spasticity quickly dissipates.

Since CCSVI made the scene, I've come to think of these as vasoconstrictive events that are temporarily making the reflux worse. But today I realized that if the problem is primarily in the jugulars, and the jugulars are only supposed to be open when you are supine anyway, then what difference would it make to my walking if the jugulars became even more closed than they already were during a vasoconstrictive event.

This concern would be erased if I were found to have azygous stenosis, since the azygous doesn't close when you're up walking around. But azygous stenosis seems unlikely at this point according to Dr Dake's findings so far.

Any thoughts?

Rokkit

I was thinking much along the same lines about the azygous. Dr. Dake made it a big point to thoroughly not only check it out, but also show me the flow and all of that. I thought, if anything, I would need azygous stents, but it didn't work that way and I saw it myself, so that part of it still doesn't fit into my thinking, but that doesn't necessarily mean I was drawing the proper correlaries.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Rokkit...
We still don't know what's going on for sure, but I have a theory (you knew I would... )

I think that the MS brain is in a state of being "almost" oxygen deprived, due to the reflux and build up of deoxygenated blood. So any vasoconstrictive event (high altitude, stress, cold weather) can tip the balance of oxygen getting into the brain and create physical symptoms. As soon as this event stops, oxygen levels can return to "almost" normal, and the symptoms go away.

I think a flare/relapse is when this hypoxic event goes on for awhile...like being at high altitude for a long time, or getting sick, or getting injured...and the damage goes a bit further. Brain tissue dies, the immune system comes in to clean up, you get a full blown relapse.

This is all theoretical- but Dr. Haacke did talk about seeing the lack of oxygen in MS brains, and the tissue death due to hypoxia, with BOLD technology (a means to measure oxygen levels in the brain) and how that fits in with CCSVI.

We're just not seeing the azygos involvement Dr. Z did....and I'm not sure if it's genetics, or length of disease, or age of patient. Dr. Z had a few of his progressive patients at the press conference, and they were older individuals (60s)..so maybe Dr. D is seeing younger individuals. Still more to come.

I also wanted to share that Jeff just went out to play his first jazz gig in over two years!! He's so excited to have energy to perform again....I can't believe it. He just thanked me for changing his life....wow. It's a good night.

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

I'd like to understand better the notion of hypoxic events being triggered by high altitude, illness, or injury(/stress?). I have been at high altitude for a couple of days (climbing 14ers) in June and September 2008, and in June 2009 (working at around 13k feet), but my first relapse started in late December. Lack of oxygen to the brain manifests itself only very shortly after getting to high altitude, i.e. most bodies adjusts to altitude differences of the order of 10k feet within a day or two. I have never been particularly prone to problems with adjusting, btw. After descending to low altitude there is generally a boost in oxygen supply (which is of course why athletes often train at high altitudes to then go to tournaments at lower). I'm imagining that only a small fraction of relapses start after individuals with CCSVI quickly ascend by 10k feet or more, simply because this is something not many people do very often (flying is a situation though were many people quickly "ascend" to around 6-7k feet, as this is what cabins are often adjusted to). Secondly, the illness, why does this lead to hypoxia? Sorry if this is a stupid question, but I really don't understand. Thirdly, what does injury do to oxygen absorption? Does it lead to hypoxia because an injured or stressed person is typically breathing less regularly? I did have a food poisoning which put a lot of stress on my body a week before my CIS, but haven't thought about a connection with hypoxia.

Thanks in advance for the clarification. Rokkit, I don't have any clever thoughts on your question right away but will quiz over it. I understand cheer's answer as saying that the jugulars are always slightly open, even when standing, and so their lack of function can lead to the tip-over to hypoxia even then?

That makes perfect sense to me. I moved from Colorado to Texas, I was so afraid of moving to texas because I was warned the heat would make my MS worse. Well since I have been here I am doing 100 times better.

When it cools off here, I start to feel dizzy and I stiffen up. In Colorado each attack happened in the fall and winter. I know most MSers do poorly in the heat, but for me I am the opposite.

I think the high altitude and cold were bad for my MS. As much as I would love to go back home, I am afraid it will make my MS go crazy and I may be in bad shape.

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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

Hi Mark, I am confused about some things you write.

1) Rokkit talks about being surprised that his MS symptoms change while he's upright, even though (as he says) the jugulars only should be open while lying down anyway. You're talking about the jugulars only being open when standing up. Which is it?

2) you say that permanently living at low altitude has helped your MS. In other words you seem to be thinking that you lived in a state of permanent hypoxia when in Colorado. But your body should have produced many more red blood cells to account for high altitude, as do the bodies of so many people that live at far higher altitudes in the Andes or Himalaya and live productive lives. Are you implicitly claiming that people with MS have lost the ability to adopt to high altitude?

3) You write that you're dealing better with high temperature. If all people with MS have the same etiology (i.e. CCSVI) behind their illness, one would expect them to agree in this regard, wouldn't one? In particular, it is my understanding that heat dilates arteries, which would increase the reflux due to CCSVI (as the veins are not able to dilate equally). I think that heat sensitivity was used as an argument for CCSVI=MS elsewhere on this forum, along these lines.

Anyway, I'm not doubting your experience of course, but I just think that if you see a confirmation of your sensitivities to coldness and altitude in CCSVI, I'm confused because it disagrees with my understanding of how these sensititvies work and with other people who are supposed to have a similar disease (CCSVI) as you.

Finally, do you think there could be any other reasons for the improvement of your feeling since moving to Texas? Dryness and lack of pollen allergies for instance? Some people with MS say it exacerbates their symptoms, and I have some evidence that this is the case for me as well.

For some reason I never really fit the profile for typical MS. But then I am always told, nothing is typical when it comes to MS and we are all different.

For me, I seem to do better in heat and I mean extreme heat. 100 plus temps do not phase me a bit. When it cools off or the seasons start to change, I start feeling poorly. Rainy days or cool days can make me dizzy, if it cools off below 70 I start to stiffen up ( that is a new symptom).

I was in Colorado one christmas and it was deep snow and cold and I did fine going up there and back. So maybe altitude doesn't aggect me as much as I thought. Difficult to know unless I am able to go back abd forth a lot.

I wish I knew, but I had MS for almost 20 years and EDSS of 1.0. My MS is not severe but my relapses are.

I agree. I think so far having occluded jugulars is the only thing that's typical.

Rokkit