This Is MS Multiple Sclerosis Community: Knowledge & Support

[shye]

Dr. Dake is of the belief that the immediate symptom relief from fatigue, cog fog, heat intolerance, spasms and bladder issues are due to relief from venous insufficiency and a quickening in perfusion time.

Inclined Bed Therapy results are the same, for same reason.

[deezll]

thanks for replies.
as i was composing the mail yesterday I was wondering what, actually, i was asking!
I guess I'm looking for another thing to focus on now that ccsvi appears not to be indicated in my case.

also wondered whether anyone had any thoughts on low bp.

Thanks for link on hypoperfusion cheer. This link you put up a few months back http://www.scientificamerican.com/podca ... l-10-07-03 certainly gave me food for thought.

I'd done a bit of a search on here but not quite enough it would seem... story of my life!

(neuros being fans of davy crockett hats was me on fb)

[deezll]

shye, bit slow on here apologies for not noticing your post before.

My husband (a very patient man) and I just de/re-clined our bed last week.
It had been inclined for about 6 months and gave noticeable improvements to freezing feet and hands but beyond that i couldn't be sure of benefits and
I seemed to lose nearly an inch in height!

Going to look for changes on getting back to flat and didn't want any changes to coincide with the change in seasons.

Now you mention cogfog I'll be on the lookout there too
thanks

[Drury]

deezil,

As testing in the UK is so new did they use the Zamboni protocol? It appears that it is easy to miss something.

Drury

[deezll]

drury, the folks i went to http://www.essentialhealthclinic.com/website/ have set themselves up as the go to guys for alternative management of ms generally (LDN, various omega supplements, etc) and have been following the zamboni protocols.
Data they collect will be added to the global ccsvi bank apparently.

right jugular
~erect: restricted flow
~supine: mild stenosis, normal flow
same on both sides.
left and right vertebral flowing ok erect and supine.

it took a while as there wasn't much pressure (?) and an artery on one side appeared to be bulging into a vein. (not quite sure how those two statements can exist at the same time but I guess I'm not a radiographer)

[Drury]

deezil,

Yes I know of them. My daughter was on the waiting list and I am happy they are on board.

have you asked Dr. Sclafani what he thinks of your results?

Also Dr. Hubbard has said (rough interpretation) even if there is the remotest hint of a blockage or stenosis he would like his patient to be treated.

Just putting everything out there.

Best,
Drury

[Cece]

it took a while as there wasn't much pressure (?) and an artery on one side appeared to be bulging into a vein. (not quite sure how those two statements can exist at the same time but I guess I'm not a radiographer)

The artery bulging into the vein might be a "carotid impression". If ballooned, it won't work there because it's physiological and the artery just presses against it again. It might be a result of overall low flow in the vein caused by a blockage lower down at the usual spots (like where the jugular merges with the subclavian vein) and when those are opened the increase in flow is enough for the vein to press back against the artery and no longer have that impression.

Not much pressure would mean blood pressure or maybe just that the flow was slow? You'd expect the flow to be slow if there's ccsvi, that's the whole problem, and it fits with the pre-ccsvi research on ms that says MSers have slowed perfusion of blood through the brain.

[frodo]

HBOT cannot sustain this change in perfusion time or increase in oxygenation...although it may provide temporary relief, it is not sustained.

Hi Cheer,

I would say that nobody is thinking about HBOT as a solution, but as a proof of CCSVI theory instead. No pure autoimmune model can explaint the HBOT effect and the CCSVI model does it quite well. If the HBOT effect is confirmed we would have an additional weapon.

[deezll]

cece: I've always had a low bp, i think.
drury: did i hear that Dr Sclafani dropped by here?
yes, frodo.

thanks guys.
d

[Cece]

He says he'll answer questions tonight but then be gone all next week and then off to China on Sept 2nd...so ask quickly if you're going to ask.

[blossom]

this is only my thoughts nothing scientific. but chambers are used to treat "lymes" disease and also for wounds that don't heal etc. now we all know that ms so it's called likes to play mind games and can be hard to pin point and is misdiagnosed at times. i think that someone had said that a few of the people dr. simka treated had not responded to ccsvi treatment and he found they had lymes disease. correct me if i'm wrong on that part. what i'm saying is that maybe in the story above about the aunt that used the chamber and got no worse for 20 yrs. actually had lymes and not ms. i think that there are a lot of us hobbling around that may not have ms and other things that they have missed or can't figure out so we get the label ms. or is there a rule that just because they say you have ms that some other factor too could not be makeing us worse. "what i'm trying to say" is that if i could be treated in a chamber i would definitely do it. what's the worst side effect other than even healthy people use them to just feel better. athletes use them to speed healing etc. maybe it would kill some bacteria or parasite or lymes as a bonus. i wish the usa would wise up and make it available. oh, i forgot, if it's not a drug or "mainstream" how could it possibly help.

[deezll]

HBOT seemed (not at all sure) to provide an hour or so's relief from a recent worsening of a blurry patch that's been on my right eye for the past 7 years. It didn't remove the old damage but it did seem to take away the last few month's activity so I guess it could be worth cramming some more 'dives' in.

I did notice the face of one of my fellow 'divers' had colour at the end of the hour or so when he'd looked grey before. I wouldn't have noticed his 'before' if the 'after' hadn't been so noticeably different.

thanks cece for heads up, think I've missed the opportunity this time around. Hope to be ready and waiting next time. I want to try and get a referral from my gp to see a vascular guy. My neuro is seeing about getting me on tysabri before 2011 I hope! (he has no time for ccsvi)

I've politely declined the CRABs so far as the risk:reward seemed poor and from what i've read the same can't be said of tysabri!

if I'd been a gambler i probably would have put it all (and borrowed more to go on red.

Blossom, I agree. There seems to be some disordered bloodflow and I'm wide open to what's causing it. if HBOT can help it only takes away a few hours of my life getting to and from the place so I think I'll carry on!

wish our health system would be a bit more 'hands on' for chronic conditions but I'd rather have the NHS than not!
This chamber's run by an MS charity.