This Is MS Multiple Sclerosis Community: Knowledge & Support

There are 100,000 in the UK alone and we are a tiny country. 'They' reckon that between 1 in 700 and 1 in 800 (depending where you live in the world) has MS.
In the UK it might be even more as we have a high number of MS sufferer in Scotland.

_________________
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

We need to know how common a procedure venous angioplasty is among patients with other venous conditions and how successful the procedure has been searching this subject I found the following two links.

http://nih.kramesonline.com/3,S,85547

http://www.rctradiology.com/venousaccess.html

Perhaps more people can search this subject and find symptoms that have been treated successfully for other patients that mirror symptoms that MS patients have.

I believe that there are distorted and collapsed veins on the brain that need repair. These are so small traditional angioplasty won't scale down enough, however there is great hope in the field of medical nanotechnology research.
see _ http://tiny.cc/apfhS

My main concern is whether or not my fiance will die after this surgery. I'll just be frank about that. I don't want him to die. I think that's a valid and justified emothion that I am allowed to have.

I read somewhere that the blood thinners a young woman took after the surgery caused her to have a fatal stroke. I'm not having this if this is the truth. What I need to know is what the name of that blood thinner was and how much she was taking.

My fiance wants to go into this "boldly". I'm calling this "blindly" as he sees what everyone else wants to see which the cure for MS. The thing is, I don't want him going into this with the wool pulled over his eyes so if anyone can help me, please let me know what the blood thinners were called and how much the poor woman was taking.

I don't mean to sound too frank. I just love him so much and to be honest a big part of me would die with him if he was killed over this. Call it selfish, but the person with MS isn't the only one living with the disease.

Thanks!
Ami

It would more than likely have been Warfarin, Ami.

I Warfarin is very widely used and considered to have a good safety profile..

_________________
Apologies for my terrible username. I never thought I'd use the forum much when I registered..

The stroke was not caused by the Coumadin; but once the bleed started, because she had Coumadin in her system, the bleed would not stop. She was already damaged by what may have been a lesion that weakened an artery. My fiance sent me the story.

I'm still scared. He goes to a cardiaologist today in Brooklyn, NY to have his results from the scans reviewed.

I only hope he asks the appropriate questions...

Ami

Yes, that is valid. There are some risks involved. I do not think the risk is particularly high. Angioplasty is a common outpatient surgical procedure. Stenting is what makes it a little riskier but if he can find someone who will stent please have him send the name and clinic of the doctor along!

We all have to make our own choices about our own bodies and lives.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Hello to all

I am reposting this here I also posted it Dr. Simka thread

Here is a link to a nurse who had the procedure in US stuff about cell growth in the vains possibly creating re-stenosis above and below stents.

Any info you can gleem from this I would love to hear.

Thanks
Pam

http://healingpowernow.com

I think she has a audio on the site where she talks about it

here is a link to audio on CCSVI from my last post its also on her site

http://www.blogtalkradio.com/elaine-del ... yths-of-ms


Pam

Hi,
I am the grandfather of a 27-year-old RRMS sufferer who is very keen to be tested and receive treatment for CCSVI.
In my efforts to find a way of achieving this I have managed to get in direct touch with an Intervention Radiologist who has successfully carried out one such procedure. (ref. GiCi) Whilst he is very approachable he shows considerable reluctance to accept further referrals. He urges caution saying not enough research has been carried out to have confidence in the procedure. More worryingly he says that he has been involved in the stenting of veins in dialysis patients where has encountered the break up of stents causing total blockage of the veins. Have any liberation patients encountered this potentially catastrophic problem and do we see a direct parallel.
My granddaughter has an appointment with her neurologist within the next few weeks and we are putting together as much information as possible in a forlorn attempt at obtaining a referral. To assist me in this task I would be obliged for up-to-date figures on number of liberation type procedures carried out worldwide but most especially by Dr. Drake.
The latest information I have on his activities dates back to June 2009 when it was said he had carried out 35 procedures. From postings on this site it would appear that he is operating on a daily basis.

harryp
Together we will win! Constant dripping will wear away a stone!

Hi HarryP,

CCSVI, as a treatment for MS, is in its infancy and will take a lot more research to determine its effectiveness as a long term and viable procedure for the disease.

Dr. Zamboni has operated on about 100 patients so far (as of last month) and has experienced excellent results. That, I am sure, is what prompted him to have a long interview session with the CTV network in Canada.

You can imagine what this interview did to shake up the world of MS medicine. It has cast a doubt on the revered autoimmune disease theory that has existed for decades and you can bet that leaves a lot of people very uncomfortable.

So you can see why most docs who may do this procedure will be very cautious before barging ahead with doing this with MS patients. It's going to take time before anything really happens in large numbers.

Also, diabetic patients who have had this procedure with stents normally have deteriorated veins and arteries from the disease. This in itself places them at a much higher risk than MS patients may be.

Hopefully, after a lot of research takes place with CCSVI, more answers will be known and MS patients will have another tool in the battle against this lousy disease.

Harry Z

.

Bob, how on earth can you even begin to compare Tysabri's history to that of CCSVI? And what do you mean "accept subjective opinions"?? Zamboni examines 100 MS patients, finds that all of them have various degrees of jugular vein blockage, operates to remove the blockage and discovers they all experience various levels of symptom relief. What's subjective about that?

He announces his work and a number of other MS docs show a lot of interest in doing their own research to see if they can duplicate his results. What a novel idea!!! No rocket science involved here, no patent protection agendas....simply some very new thinking in possibly how to treat MS patients. An initial treatment that shows promise and requires more research, just like the thousands of other ideas from MS research.



Holy cow, Bob....who pi**** on your cereal this morning. I haven't changed one bit on this forum or any other MS forum. But I can certainly see the difference in how somebody like Zamboni progresses with a new MS treatment as opposed to how Biogen handled the introduction of Tysabri into the marketplace.

More interested in making friends??!!! Man, you really need a holiday, Bob

Harry

.

Elane delack doesn't know what she is talking about. I talked to her and one other person on her drug. It sounded to me like neither of them had ms. I tried the prokarin and sent me into a exacerbation. When I called her she said it was to high a dose. Against my better judgment I tried a second time 1/4 patch and my ass got number.She says that's OK, no it is not OK a flare is like a mud slide hard to stop or reverse. I am 25 years in and bad things happened and changed the disease. So anyway if you are first symptom with very little symptoms this may work. When I listen to her talk she talks about proliferation, as far as I understand that is simply the life cycle of a cell. that is my experience. There is also a supplement called Diosmin that has been used in clinical trial and shown to open varicose veins, it used to be phama in Europe. I am taking horse chestnut and felt results immediately only two months on that, it may be that simple, I am praying and trying to be patient. Prokarin may be worth a try if you have a extra 200$ a month. but they will send you the first month to see if it works.
I think for someone who is not to far in this may work quickly, the vein strategy, I mean.