This Is MS Multiple Sclerosis Knowledge & Support Community

M, I have the same 'brain'effect..like it's screaming to get rid of more iron since the last blood draw(only 40-50ml) This will be our problem..why should we have to beg to get rid of our own damned blood? I was always told I had great blood too..lucky me...interesting when my periods stopped so did my ability to walk.The small amount of blood theytook for testing stopped the painful spasms for 4 days..such relief but that is ignored as imagined. As I said long ago, we'll have to find a willing phlebber who will do this safely and if we have enouph of us we can share the cost..dghter is looking for me as she knows alot of people. I see no other way...

I have been trying to think of a cost effective way to contact doctors and I think what I'm going to do is write a template/generic letter that I can fax to every single hematologist I can find in Canada. Even associating the word MS/hemochromatosis/phlebotomy is a way of planting seeds. Sort of like the theory of 100 monkeys

http://www.wowzone.com/monkey.htm

the first time somebody hears that people with MS and iron overload want to be treated with phlebotomy, it will probably discombobulate. But if we keep associating the terms, eventually it is not going to seem so odd.

Ever heard of cupping? Thats where people can have blood extracted-hopefully by trained proffesionals. It's used in arabic countries by muslims.
Might be worth checking it out as an option if your interested.

katie45 wrote:M, I have the same 'brain'effect..like it's screaming to get rid of more iron since the last blood draw(only 40-50ml) This will be our problem..why should we have to beg to get rid of our own damned blood? I was always told I had great blood too..lucky me...interesting when my periods stopped so did my ability to walk.The small amount of blood theytook for testing stopped the painful spasms for 4 days..such relief but that is ignored as imagined. As I said long ago, we'll have to find a willing phlebber who will do this safely and if we have enouph of us we can share the cost..dghter is looking for me as she knows alot of people. I see no other way...

I sent a letter to the canadian ministry of health asking that they look into and test ms pts for HH and sanction trial phlebs to be continued according to favorable responses etc....I haven't rec'd a response other than they rec'd it and forwarded it for reveiw (whatever that may mean)

Thanks Daisy..I will look into it..

It is a medical treatment btw..its not done randomly..lol..
It's meant to either help blood flow through the body through massage or through extraction. It seems to make sense with the whole CCSVI thing.

Let me know if you find anything:-)

katie45 wrote:Thanks Daisy..I will look into it..

m, when you construct your generic letter could you email me a copy? I would also be willing to help get them out if you like. kt katson45@shaw.ca

Daisy, the cupping looks like it would bring blood to the area being 'cupped', but how would it actually remove iron from the blood? Wouldn't it reabsorb? Sorry...didn't read far enough...this would work...

I'd also be interested in getting a copy. I may need it, as I don't write so well, tend to ramble. bethr@osoal.org.nz

Cheers

On Monday Feb 22nd my UK NHS doctor seemed positive towards my request for phlebotomy re haemachromotosis resulting from a mutated gene CYS282Tyr.

Today is Friday March 5th. Not a word since. Am having doubts as to his intentions, or whether other doctors in the group practice have blocked him.

and we get nailed for mentioning conspiracy

Am considering a plan of action if my doctor doesn't come up with the goods - a phlebotomy appointment.

I think the next step will be to get an appointment with my neuro - hardly 'my' neuro as I've only seen a neuro three times in 25 years! Last time, about 7 years ago he said all he could offer me was an MRI and/or a course of steroids, both of which I refused. So this time I should remind him of that, tell him about the haema history of my mother, my CYS282 mutation, and ask for phlebotomy.

If that fails, I will go to the local newspaper with the whole story.

I thought that they actually removed blood via cupping as well as massaging to try and improve blood flow in problem areas..I'll do some digging around and see what I can find:-)

katie45 wrote:Daisy, the cupping looks like it would bring blood to the area being 'cupped', but how would it actually remove iron from the blood? Wouldn't it reabsorb? Sorry...didn't read far enough...this would work...

yes, it does actually remove blood....that.s why I edited my post to say I didn't read far enough..lol

M et al, I have been trying to find a way of contacting the ccsvi researchers so you could submit this idea/protocol to them...how does one contact the zamboni team? We need some 'airtime' with credentialed researchers I guess.The only other way would be'at gunpoint' ! If this idea involved a drug, you'd have no trouble at all.