this is interesting... PKAN

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

this is interesting... PKAN

Postby highhopes » Thu Feb 11, 2010 4:09 pm

any posts on Deferiprone?

http://abclocal.go.com/kgo/story?section=news/health&id=7267620

i dont know where this belongs, but interesting nonetheless...
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Postby AlmostClever » Thu Feb 11, 2010 4:52 pm

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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Postby AlmostClever » Thu Feb 11, 2010 4:59 pm

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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Postby highhopes » Thu Feb 11, 2010 5:58 pm

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 on Fri Feb 12, 2010 7:16 am, edited 2 times in total.
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Postby highhopes » Thu Feb 11, 2010 6:52 pm

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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Postby BBE » Fri Feb 12, 2010 2:23 am

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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derferiprone

Postby jak7ham9 » Fri Feb 12, 2010 4:29 am

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

Postby ErikaSlovakia » Fri Feb 12, 2010 5:16 am

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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Postby Cece » Fri Feb 12, 2010 4:51 pm

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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