this is interesting... PKAN

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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highhopes
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this is interesting... PKAN

Post by highhopes » 9 years ago

any posts on Deferiprone?

http://abclocal.go.com/kgo/story?sectio ... id=7267620

i dont know where this belongs, but interesting nonetheless...

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Post by AlmostClever » 9 years ago

VERY INTERESTING!!

1) I wonder what Travis' doppler and MRI look like...

2) I bet this might have use in MS.

Maybe someone should contact this doctor and see what else he's used this for.
If you can't explain it simply, you don't understand it well enough. - Al Einstein

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Post by AlmostClever » 9 years ago

just checked and many references can be found.

here is one:

http://www.thisisms.com/ftopicp-82207.html
If you can't explain it simply, you don't understand it well enough. - Al Einstein

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highhopes
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Post by highhopes » 9 years ago

AC,

i did a search too and deferiprone was buried in the posts deeply and i gave up tracing down the word...

if anybody knows info about deferiprone, could you post it? dedicated to deferiprone?

CCSVI is still quite new, so i doubt there is much info available on the iron deposites in the brain. i am lucky enough to get IJV correction in early march and im already working on the next step... maybe this is it? since my neuro is relatively non-existant now, i feel like i have to do this all on my own...

advanced thanks to anyone who chimes in!
Last edited by highhopes 9 years ago, edited 2 times in total.

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highhopes
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Post by highhopes » 9 years ago

just read that thread that you posted, AC, and it looks like i have to find a neurologist that is interested in this theory.

i AM interested, but i am a filmmaker and a musician, NOT a specialist with regards to the human brain...

thanks for that link!

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Post by BBE » 9 years ago

the only link I found...
Deferiprone, an orally deliverable iron chelator, ameliorates experimental autoimmune encephalomyelitis
http://msj.sagepub.com/cgi/content/abstract/13/9/1118

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jak7ham9
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derferiprone

Post by jak7ham9 » 9 years ago

Hi I ordered deferiprone a monthago still have not received it. It is not available for use in usa. You can get it in europe and mexixo try the internet. They have exjade and desferroxamine but deferiprone sounds better. THERE ARE SEVERAL ARTICLES where it is used to treat fredericks ataxia to good sucess. That is a gentic ataxia which is based on iroon accumulation problems. I think it will be a key answer for treatment. Barbara

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Re: derferiprone

Post by ErikaSlovakia » 9 years ago

jak7ham9 wrote:Hi I ordered deferiprone a monthago still have not received it. It is not available for use in usa. You can get it in europe and mexixo try the internet. They have exjade and desferroxamine but deferiprone sounds better. THERE ARE SEVERAL ARTICLES where it is used to treat fredericks ataxia to good sucess. That is a gentic ataxia which is based on iroon accumulation problems. I think it will be a key answer for treatment. Barbara
Yes, we have Exjade in Slovakia for sure. I just must have an prescription.
I just have to find a doctor who would prescribe this to me.
First of all I must find out what specialist might prescribe it. All doctors I am in contact with do not know.
The other problem is the doctor can only prescribes it when he sees my iron deposits. I do not know why, but MR doctors have difficuilties to install SPIN software.
I hope I will manage this year.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

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Post by Cece » 9 years ago

Interesting! You'll post back, either of you, once you've tried it?
"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

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