This Is MS Multiple Sclerosis Community: Knowledge & Support

In illness frequently a "pulse oximeter" is used to measure the percentage of oxygen that's in the circulating blood. It's the little gizmo they attach to a fingertip or an earlobe that measures the oxygen saturation in the circulating blood.
But in MS/CCSVI the CEREBRAL blood oxygenation is lower than normal OR THE CIRCULATING blood oxygen saturation.
(validated by multiple recent studies that measure perfusion.)

If the percent of oxygen in the blood was slightly elevated by administering supplemental oxygen with a nasal cannula and a small portable oxygen concentrator then even if the transit time were delayed the brain tissue would not be starved of oxygen. The higher percent would allow for the delay. I am sure it would help prevent brain tissue injury.

Of course the pulse oximeter is not accurate in the cerebral blood oxygen levels in people with CCSVI, so there would have to be a method or ratio devised by some perfusion/oxygen measuring MRI, but I bet people with CCSVI PRE-Venoplasty would benefit from oxygen therapy, many with oxygen at night. Small amounts of oxygen given to people have little risk except in neonates/infants.

Just an idea. What do you all think?

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

Gives me ideas for very invasive testing:

-use an instrumented catheter such that blood in various vessels may be measured for oxygenation (pO2). use a 'Clark' miniaturized polarographic oxygen electrode.

-compare oxygenation with the same subject(s) having the same level of activity (as prescribed) and oxygen uptake (as collected and measured), between value(s) obtained in arterial flow and value(s) obtained in cerebral and spinal outflow.

You can of course also compare the cerebral and spinal outflow deoxygenated blood in subjects with CCSVI with that of subjects without.

-similar kinds of catheterized instruments may be used to measure things like pH and pCO2.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

This will be interesting cause I just wore that thing overnight. Im waiting for results

Brian, was it supplemental oxygen or just CPAP of room air?

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

Baric oxygen chambers are used extensively in the UK and have been for at least two decades. It does help undoubtedly.

The thing is, there's no money in it, so it has to be run on a charitible basis.

As there's no money in it, there's no compulsion to research it, yet thousands of pwMS use faciliteis like this daily.

Emma has just completeld a course of 30 "dives" - it improves her eyesight and fatigue levels and is very obvious when she misses a session.

In the USA we have many Home Oxygen companies,such as Apria Healthcare, Lincare, etc who might fund a study. They have the equipment and the resources.

But we would have to find volunteers that are pre venoplasty. Do you think we could get them?

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

Without pressure, the efficacy of oxygen is greatly reduced so a home tank or similar really isn't the way to go, it's a chamber combined with the oxygen that does the trick.

I believe that in the rabbit model it has been shown the supplemental oxygen reduces intimal hyperplasia but I do not think this panned out in the human model. I used worked with one of the authors Dr. Santilli. University of Minnesota if you want to search on pubmed.

for the last 3 weeks i have been going through a very hard hitting flu or something. as anyone of us know this can knock you for a loop. to top this comes with unbelieeable mucous, congestion and coughing. almost non stop. no sleep because of this etc. but, because of this i find it impossible to just take a nice deep breath or even breath normal without starting the coughing etc. all over again.

what i'm getting at is yes think lack of the right oxygen does us harm. because the initial weakening that the flu does is gone. but the mucous and cough in lingering and i feel like i need oxygen. i'm just going by my symptoms-my feet are more purple, more swelling my hands are colder etc. when i get the occassional spell where i can breath a little better i have more strength and stuff.

being low oxygen could do nothing but harm and especially after what i am experiencing now if feasible i would like to definitly give hbot a shot. of course we all know our old buddy the fda doesn't want to help us with a simple and unharmful therapy.

I did the overnight oximeter test and had 26 desaturation episodes where oxygen fell to 80%... over an eight hour period my average saturation was 90%... they immediately prescribe oxygen at 88%, but because I was 90% I am considered okay. I have in my possession a Vitaeris 320 mild hyperbaric chamber and I am simply waiting for my Integra 10 L oxygen concentrator and then I will begin regular treatments. There is a lot of information out there on mild hyperbaric therapy for MS and any kind of cerebrovascular condition. I understand that 80% of people with MS respond to hyperbaric treatment, with a mild chambers duration is the key, you must do 80-100 treatments at minimum, see what happens and then continue with at least twice weekly treatments. Who knows? It's a gamble, a lot of money on potential help but no guarantees. I am primary progressive, and nothing but nothing has helped me thus far except phlebotomy, and I cannot continue that due to low hemoglobin.

I think if I were looking into oxygen use (I might) I would want the CPAP to work with it somehow. I just think if the blood can't drain fast enough, even 100% is not enough.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Even post-venoplasty it might be that supplemental oxygen would be beneficial. Not all venoplasties correct CCSVI 100%. And if supplemental oxygen potentially reduces intimal hyperplasia, that's a second benefit.

There must be a reason though for the heart failure advise not to use supplemental oxygen routinely.

MegansMom, as to whether pre-venoplasty volunteers could be found, I would think that would be relatively easy.

This is no reflection on the merits of revisiting the original topic, but FYI to Cece & others - this is a thread from almost a year ago that was bumped this morning by a new poster trying to sell something.


Update on 6-29-12: The post to which I was referring back in February (see above), was deleted due to the fact that it was Spam, making my comment irrelevant. So...now that this old thread (originally from June, 2011) has been bumped yet again, I'm updating my post from February, 2012.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Has using an oxygen concentrator at night ever been researched in MS? That can't be that hard of a study, and the vascular/hypoxia model suggests that it might have benefit.

Probably post-procedure barometric O2 would help heal the vein. But could it speed up restenosis, somehow?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience