This Is MS Multiple Sclerosis Community: Knowledge & Support

I have just been diagnosed for CCSVI (one internal jugular occluded).

Maybe it's the UV (also vitamin D) + cold fresh dry air... and some movement (since walk a lot in the fresh air whole day) that improves circulation + also nerve transmission.

I can only say that I always felt better on symptoms like instability, fatigue + pins/needles. I do not think that CCSVI is it all. It plays a big role on cause most likely, but nerve transmission also does play a role in terms of already long-term myelin damage. It might repair slowly though (and this is what we all hope!), if the cause is repaired. In a few years, when the brave pioneers of intervention will report to us we will know!

Myelin is a liquid crystal, not unlike the liquid crystal in an lcd screen. It goes through stages of being useful to being useless depending on temperature, circulation and the direction of gravity.

The dry air at altitude would be of great importance in assisting the circulation. Humidity after all is well established as having an adverse affect on ms symptoms, so the opposite logically should help considerably.

My research as I have repeated many times relates to how evaporation alters the density of the fluids from which water is evaporated. In the lungs this is surfactant, which moves back into the blood following exhalation where more flows back to the lungs to replace it. When this fails we develop stagnation of fluids in the lungs and circulation collapses following infection. Flat bed rest is very useful for assisting this process and is used by the nursing profession to assist a rapid demise in terminally ill patients. Removal of the pillows and laying a person flat is known to cause rapid death. And it’s practice I have witnessed at first hand!

The signals from and to the brain excites along the myelin like skimming a pebble across still water. This accelerates and increases the power of the signal. In the ms lesion damaged area, myelin is no longer behaving correctly and the gap for the signals to jump becomes too great, causing the nerves to short circuit.

While no full regeneration of the nerves can be taking place at altitude due to the short stay and presumably flat bed rest. It is entirely feasible that the circulation in the nervous system is stimulated by the reduction in atmospheric pressure and the reduction in humidity.

Evaporation from the respiratory tract and skin would be greatly increased at altitude. The boiling point of water is altered at altitude. Water boils at a much lower temperature, so low in fact there is a risk of food poisoning because the bacteria survive the boiling.

This altered state of water must be taken into account in any discussion on altitude.

The nervous system undoubtedly responds to posture and respiration. We know the heart does not move the fluids inside the nervous system. So could the extra efficient evaporation from the eyes, sinuses and respiratory tract be providing a stimulus for re-hydrating the liquid crystal myelin, all be it temporary and to return back to it’s damaged state at sea level?

This would be very easy to test in clinical trials, but I doubt it will be done in my lifetime given the contempt arrogance and ignorance and lack of compassion I have encountered from those who direct the research and who should have the patients health at the front of any agenda, but sadly would rather keep doing the same old same old and expecting different results? Madnesss or preferring the status quo!

But what about long term restoration of the damaged myelin? Could simply getting into a hot bath adversely affect the myelin? What about a sauna? Or a wrap around hair dryer? Drying washing on the radiators? Living in river valley areas? Weather changes? Using a dehumidifier? Living on a dryer hillside instead of in a very damp low level area? A sudden drop in temperature?

And then we need to address why some people who live by the coast do not have high prevalence of ms?
Could a healthy diet of fish and vegetables and plenty of water and fruit juice answer this? Could this explain why people moved from an area of low incidence of ms to an area of high incidence of ms be explained by diet and lifestyle changes?

Swapping an active energetic lifestyle to eating junk food and watching tv instead of

Could a heavy mineral and sugar loaded diet adversely affect the circulation? Chocolate, dairy, switching from fish to meat, junk food, salt, sweets, pastries, bread, be responsible for upsetting the apple cart of circulation? I have heard it said time and time again that Christmas diet causes problems for people with ms. Coincidence?

This is very likely. Having a high density diet in the gut and intestines would increase the overall density of the blood and fluids and would compromise the uptake of fluids from the stomach and intestines, slowing down all the body processes. Ever felt very tired after eating a large Western meal? So tired you just want to lay down and take a nap? You don’t need to be ill to experience this draining and self-induced lethargy.

Food for thought?

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I think your right Zeureka that it all plays a part.

After all,
we still don't know what the initial cause of the disease is.. only what seems to relieve the symptoms.
So far ccsvi seems to be a huge step forward toward the right direction in answering why? and how?..
Further investigating needed no doubt but I guess till then.. ccsvi seems to be effective in treatment.. according to current testimonials.
These no doubt are exciting times!

Perhaps its best to start with the “classic” definition of CCSVI and troubleshoot from there. The following is from Cheerleader’s “Just The Facts” thread:



Ostensibly, one would think that moving to an environment of low oxygen (hypoxia) should worsen a condition of hypoxia not make it better. Thus if MS patients are experiencing an abatement of their condition by exposing themselves to high altitude does this put CCSVI as a model of MS on shaky footing?


Two possibilities present themselves to explain the anecdotal evidence of symptom improvement at higher altitudes. 1. Higher altitudes simply helps mask nerve damage but has no effect on disease progression or 2. It does have a positive effect on disease progression for some other reason (not inconsistent with CCSVI).

As Andrew notes, there do not appear to be any studies on this subject so we are left attempting to scale this mountain with theory alone.

Starting with the first possibility, that higher altitudes help mask neurological damage, higher altitudes may simply "improve" MS because they are cooler and less humid. This may simply relate to core body temperature. Nerve damage is easy to expose by a hot bath – most patients will notice a detrimental effect on their ability to walk after increasing their core body temperature in, say, a hot tub. Yet exposure to warm water does not cause MS and has nil known effect on the progression of the disease. It just exposes damaged neurological function. A swim in a cool pool, on the other hand, tends to improve walking ability (by lowering core body temperature). Exposure to cool water, however, does not cure MS or influence its progression.

Following this along, moving to a higher cooler altitude may help mask damaged neurological function like a refreshing cool swim. One might also add that gravity is not as strong and that may influence (slightly) a feeling of being able to ambulate better.

Possibility #2 is that higher altitude exposure has a beneficial effect on disease progression. But how? One possibility I raised is a potential chelation effect on iron deposits in the brain. It is well known that iron absorption greatly increases at high altitudes as does production of plasma. Does high altitude exposure help soak up excess iron deposits in the brain that may be "getting on one's nerves"? The study below (kept by the American Society of Hematology) shows that iron absorption increased threefold in test subjects moving from sea level to high altitudes. Based on this, is altitude exposure indicated or contraindicated for those suffering from CCSVI? Anyone care to explain using the CCSVI model?

I'm looking hard at iron in the brain (and elsewhere) at the moment.
If you were not taking in sufficient iron at altitude, the iron would be drawn from the store areas, whereever they may be to create the new red cells needed at altitude.

I relate this to the fact that when I have blood taken, even in a small amount I get relief from all symptoms in 24 hours. 100mls lasts 4 days and then I revert to havig my symptoms in 24 hours. An increase in red blood cells would maybe have the same effect (but slower).

I'm just getting over my last blood take, larger this time 470mls.
The first day I was tired but not sleepy, unusual short pulse pains in my head, unusual fluttering in the chest, and electric feeling, hard to explain.
24 hours and I was feeling wonderful.
I was symptom free for 11 days, with high high energy levels and amazing wellbeing. At 12 days the symptoms came back, and I experienced spasticity for the first time. Very severe like a fit.
Also unusual feelings of tremors and tightness in the chest, and more severe than the 24 hours after the blood take.

It's all calmed down now after 24 hours, and I seem to have stabilized.

I have mild hemochromatosis, iron overload.
To treat iron overload, blood is taken from the patient weekly until an almost anemic state is induced. The body draws on the iron stores and symptoms of fatigue and stiff joints abate. Some problems correct after this and others will not, such as cirrhosis of the liver. Yet fibrosis of the liver will reverse. Thyroid problems seem to reverse too. Arthritis doesn't.

Interestingly I read a medical study of I think 13 hemochromatosis patients who were given MRI's to check the brain, and 6 had lesions. None had ever suffered from any neurological disturbances.
Maybe I don't have MS?

The ccsvi definition explains the high altitude effects perfectly.
The primary cause of the condition, including the hypoxia, is the narrowed veins.
This is exactly what the low atmosphere pressure relieves and allows for the increased blood flow as does ccsvi therapy.
Ever seen a weather balloon released at ground level. It's empty and almost totally uninflated. Just enough to rise.
Why do you think that is?
Well to allow for the expansion at high altitude. Otherwise it would burst if fully inflated at the ground level release.
Our body's are no different.
We benefit by freeing the veins from the stenosis some what.
Again, similar to the ccsvi therapy dont you think?

Are you denying blood flow improvement at altitude? Please explain..
It isn't one reason and not the other for the benefits felt at high altitude.. but many reasons.
The fact is blood circulation increases dramatically at higher altitude.
Lets look at the facts.
The altitude sickness to ms sufferers at high altitude is no different to the healthy person.
No worse and no better.
I myself and others can testify.

And as the majority of ms sufferers have some form of ccsvi, including myself as my ultra-sound Doppler test revealed, the fantastic benefits achieved by many ms sufferers at high altitudes cannot be disputed.

The body is an amazing machine and is designed to win. Once the narrowing has been improved, as it does at high altitude, improvements are felt almost immediately, to what degree certainly may vary (as the ccsvi therapy varies).

Again, elite athletes train at high altitude for physiological improvement!
It's not as destructive as you suggest by unproven theories when again, our testimonials can verify this.
Very similar to the ccsvi therapy.

I'm fully aware of the destructive effects of the stenosis to the brain etc.
I'm also fully aware of the positive effects of the enlarging of the narrowed veins, including the natural response of the body at high altitude with similar effects on veins.

All the theories you have provided so far are interesting, but, you don't seem to acknowledge the effects of high altitude on blood circulation.
Again, it cannot be denied.
Ask an elite athlete!!!

That is very interesting Bethr.
Makes alot of sense too.
Could it be that the iron build up, due to the stenosis, is released once stenosis is rectified and actually used for new red cells at altitude?
Most likely the main reason for almost immediate improvement also in the ccsvi therapy.
Thats sounds very plausible!

I argued against hyperbaric oxygen therapy for all of those reasons.

From the few cases I found all those years ago, the evidence that a low pressure and possibly normal air than oxygen enriched air would produce results, particularly if posture was correct (sitting with knees lower than seat) or on an inclined bed.

Even went to the trouble of contacting the centres that did HBOT and although some were interested they argued that the chambers were designed for increased postive pressure and could not be used to reduce the pressure. I suspect they would have been fine at the reduced pressure.

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http://en.wikipedia.org/wiki/Cabin_pres ... zed_flight

http://upload.wikimedia.org/wikipedia/e ... Bottle.jpg
An empty water bottle which was closed during a commercial transatlantic flight with a cabin pressure equivalent to an altitude in the range of 6,000 to 8,000 ft, photographed when back on the ground, showing that the higher pressure compressed it during the descent (Cabin pressure decreases as the aircraft climbs, and cabin pressure increases as the aircraft descends).

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Thanks for the interesting posts.

A question following on from this - what is a good high altitude holiday destination, the nearer to an airport the better.. I want to carry out a case study..

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I'm in no position to refute your positive experiences with altitude and your noted improvement in your condition. I haven't had similar experiences, on my odd trips to the mountains - or paid close enough attention.

I do dispute that high altitude should produce a benefit to those exposed to it with CCSVI based on blood flow alone. Indeed the opposite would be expected. I don't agree that exposure to higher altitudes improves circulation, rather it challanges and taxes it. The body has to work harder to extract the same amount of oxygen from the thin air and does so by increasing respiration, heart rate, blood pressure, and the volume of blood in the system.

Where there is kink in a hose (like an occluded jugular vein) increasing fluid volume and pressure should make the situation worse, not better!

We are not like baloons because out lungs and bodies are not sealed. They aspire and expire air. They have to aspire and expire heaps more of it to extract the same amount of oxygen than at lower altitudes.

Althletes train at high altitudes to increase the number of red blood cells in their system right before an event. High altitude training is therefore more like resistance training for the circulatory system, because it is harder to do at altitude.

I think these concepts are well explained in the article below. Once again, high altitude benefits if they exist for MS sufferers must be caused by something other than blood flow.

Our bodys actually does respond with increased blood flow at higher altitudes and veins in particular do open and offcourse narrow.. as we all now know. Just like what AndrewKFletcher's pic of the water bottle .
Great pic Andrew!

Lets summarize...

-High altitude relieves narrowed veins due to low atmosphere pressure
-Increased blood flow occurs
-Body produces more red blood cells at altitude which requires more IRON... WOW!!!!
-reflux is no longer occurring and the deposited iron is most likely now used for the red blood cell production.

Hallelujah!!!!!!

ElMarino,

I too am looking for a wheelchair friendly high altitude destination.
The higher the better.
Nearest to Australia would be the Himalayas but probably not very easy to travel to.

I wonder if a revolutionary treatment of MS will end up being a good bleeding in order to chelate iron.

Once again, high altitude does not relieve narrowed veins!

The water bottle picture demonstrates that air expands and contracts with altitude. This not a vein. Notice that the water bottle is capped. Your veins aren't capped.

Increasing blood flow through a restricted vein should cause more harmful reflux. Add to this that venous thrombosis can be caused by high altitude, and you could have a recipe for disaster.

Before you book your ticket to the Himalayas, consider the experience of this mountain man who did the same as reported in this radiology imaging journal

http://medind.nic.in/ibn/t06/i3/ibnt06i3p313.pdf

Actually, the water bottle pic is caused by an increase in the atmosphere air pressure which causes this air expansion and contraction.
Why do you think air expands and contracts in the first place?
Atmosphere pressure.
Same occurs to liquid as well as gases.
The human body is about 60% water.
Cannot be denied.

Nor can the many ms sufferers testimonials of improvement which correlates with ccsvi treatment.

If I had experienced the worsening effects you describe that SHOULD occur according to data , I of course wouldn't advocate high altitude destinations for ms sufferers..

However, this did not occur, and real life experience at altitude by many ms sufferers, including myself can testify this.

Quite simple really.

Not to mention an increase of red blood cells at altitude requiring IRON!!

Fantastic!!

Altitude increases your red blood cell count and your haemoglobin level.
What are the negative effects of this??
I certainly didn't feel any of the negative effects as suggested.
Only incredible improvement (except for the altitude sickness which passes after a couple of days)

Absolutely fantastic!