"MS" is the n-word of the medical world.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

"MS" is the n-word of the medical world.

Postby 1eye » Tue Sep 30, 2014 3:19 pm

A poor start on research, a fascination with replicating Zamboni's work on ultrasound, and a general, out of proportion, negativity to the concepts regarding the role of ccsvi as a cause of MS rather than as a method of symptom relief have distracted from good research partnerships.


http://wwwmsviewsandrelatednews.blogspot.ca/search/label/CCSVI

"MS" is the n-word of the medical world.

I hope I will be forgiven my negativity, whether it is out-of-proportion or not. I have some deep connection to this topic, and I am subject to many maddening influences.

I am tired of seeing ads for drugs. I am particularly tired of rebif, avonex, and betaseron ads: drugs which do nothing. There is even a drug now for those who might have been stupid or unlucky or both, enough to get PML from Tysabri or one of the newer "DMD"s.

I am tired of being told I am not going to get better. I already have, and continue to get better. Drug and insurance companies will not help, supposedly because I will not benefit. From anything. Even from a specialist to look at my Xrays of my broken collar bone. Besides, if they treated me, and something helped, the medical world would be short one potential guinea pig. Not worth treating.

I am tired of "MS" patients being told to wait. Being ignored. Being told, like a speech from a Sunday-morning televangelist, that help is on the way, that a cure is just around the corner, that all I need to do is donate to the Church of "MS". Tired of "MS" patients being warehoused, tortured and killed by drug-experimenters looking for nothing but the next blockbuster drug payday and stock-market killing. Tired of it being called informed consent when it is really disinformed non-consent.

walking disability is complicated because spastic paralysis and paresis, imbalance, and fixed foot drop, together with a generally unfit physique impair ability to improve walking in many patients. Improvements in ambulation often take a very long time but do occur.

Unfortunately dead neurons cannot be resurrected. However dysfunctional neurons can be made to work better in my belief.


Vestigial balance problems can be treated. The device is inside every phone, camera, and computer. It is connected to another device that can communicate via electrical impulses with the wearer's tongue. By now, it can probably be integrated into a pair of glasses.

Proprioception and balance can be retrained, with probably $5.00 worth of hardware. Why is this not offered to people with "MS"?

Parkinson's, ALS? Because it is not a drug, so not enough money can be made. Foot drop is an ailment that can be retrained as well without the use of the paralyzing braces and lifts.

It is known that
pulsatility index (PI) from pedal arteries by using CW Doppler [] below cut off value of 5 [is] a confirmatory evidence of autonomic neuropathy.
and that
lower limb hyperperfusion owing to arterial neuropathy in various degrees produce venous stasis and is also responsible for some venous abnormalities.
This must be a large part of the problem in people who cannot walk. Does anyone care enough to treat this without drugs that cost $30,000 yearly, and must be taken for life?

http://www.minervamedica.it/en/journals/international-angiology/article.php?cod=R34Y9999N00A140042

Dysfunctional neurons can be retrained. Does anyone care to do it? Not neurologists, when they do fine, thank you, using standard "DMD"s lifetime prescriptions, and clinical trials. Why rock the boat?

I have improved my condition using home electro-therapy, to the point where I no longer get venous skin ulcers. This is not offered to me or to diabetics, because of missing monetization, the biggest hole in anyone's health-care system.

I traveled 9 km by recumbent tricycle today, on a path which I last traveled the day I retired my bicycle 10 years ago.

But I will never get better.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: "MS" is the n-word of the medical world.

Postby DougL » Wed Oct 01, 2014 9:28 am

congrats on the 9K tour
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Re: "MS" is the n-word of the medical world.

Postby 1eye » Wed Oct 01, 2014 9:40 am

Just got back from another one :)

Am I bitter? I think it's all a matter of taste. I think sometimes I need a sweeter diet. Doughnuts... Mmmmm. (Drool.)

Balance problems? Iphone may help. You can probably get it on an android phone too...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2577218
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: "MS" is the n-word of the medical world.

Postby ElliotB » Wed Oct 01, 2014 10:55 am

I got a 3 wheeler last year because of my balance issues, but graduated back to a two wheeler two weeks ago. Have not fallen over yet! 1st time out was exhausted mentally after a mere 1 1/2 miles, but have built up to over 6 miles with no ill effects. Each day I go a bit longer. My goal is to triple that within a month. (Both bikes offer electric assists - insurance so I can make it back home just in case...)
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Re: "MS" is the n-word of the medical world.

Postby 1eye » Wed Oct 01, 2014 11:39 am

I got a 3 wheeler last year because of my balance issues, but graduated back to a two wheeler two weeks ago. Have not fallen over yet! 1st time out was exhausted mentally after a mere 1 1/2 miles, but have built up to over 6 miles with no ill effects. Each day I go a bit longer. My goal is to triple that within a month. (Both bikes offer electric assists - insurance so I can make it back home just in case...)


Congratulations! :smile:

I may stay with the old recumbent tricycle because the reason I fell over with my bike was that I couldn't get my foot out of the toe-clip. I now wear sandals that have a conventional pedal clip embedded in the soles. The left (dropped) foot stays on the pedal but I can't fall over. The problem with recumbents is that you can't put your weight into pedaling. That makes uphill very much more difficult.

Ya gotta watch out when on a slope, too, because if you're not fast with the brakes, you may go backwards over a cliff. I had my chain fall off, and this happened to me. I looked very atrocious, like somebody tried to punch my eye out.

Anyway I have been looking for an electric assist for hill climbing, though I know I can get lower gearing. There are wheelchair wheels with motorized hubs. I would like one of those for the rear one on my trike. Not sure how it would work with the derailleur. How does yours work? Tell me more!
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada

Re: "MS" is the n-word of the medical world.

Postby ElliotB » Wed Oct 01, 2014 12:56 pm

The bikes I bought had the electric option to start with, but there are add-on kits available (hub, battery, controller). Cost varies depending on the type of battery and the battery capacity (depending on how many miles you want it to work for).

Here is some info:

http://www.e-bikerig.com/e-bike-kits/?g ... AvuV8P8HAQ

Amazon has the same/similar products, just type in "electric bike conversion kit with battery"



The battery is probably the most expensive component. Many of the kits on Amazon do not include the battery. Changing the front hub is probably the easiest conversion depending on type of recumbent bike you have, of course.
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Re: "MS" is the n-word of the medical world.

Postby 1eye » Thu Oct 02, 2014 11:43 am

I had a response from the company mentioned in http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2577218

They claimed the FDA had refused them permission to manufacture it. I think this is by a long long way overstepping the jurisdiction of this government body.

It was probably because of some wrong-headed clinging to the illegitimate argument that the only kind of scientific proof is a placebo-controlled, randomized study.

I told them if Apple is not interested, Android manufacturers would be, and if the FDA refuses them permission, I'm sure somebody in China will be glad to take people's money. I hope they do.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
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Posts: 2961
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada


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