this is interesting... PKAN

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
User avatar
highhopes
Getting to Know You...
Posts: 20
Joined: Wed Dec 16, 2009 3:00 pm
Contact:

this is interesting... PKAN

Post by highhopes »

any posts on Deferiprone?

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

i dont know where this belongs, but interesting nonetheless...
AlmostClever
Family Elder
Posts: 366
Joined: Mon Dec 21, 2009 3:00 pm
Location: Houston, TX
Contact:

Post by AlmostClever »

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
AlmostClever
Family Elder
Posts: 366
Joined: Mon Dec 21, 2009 3:00 pm
Location: Houston, TX
Contact:

Post by AlmostClever »

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
User avatar
highhopes
Getting to Know You...
Posts: 20
Joined: Wed Dec 16, 2009 3:00 pm
Contact:

Post by highhopes »

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 6:16 am, edited 2 times in total.
User avatar
highhopes
Getting to Know You...
Posts: 20
Joined: Wed Dec 16, 2009 3:00 pm
Contact:

Post by highhopes »

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!
BBE
Family Member
Posts: 65
Joined: Sat Sep 05, 2009 2:00 pm
Location: Slovakia
Contact:

Post by BBE »

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
User avatar
jak7ham9
Family Member
Posts: 90
Joined: Mon Oct 29, 2007 3:00 pm

derferiprone

Post by jak7ham9 »

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
ErikaSlovakia
Family Elder
Posts: 1125
Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe
Contact:

Re: derferiprone

Post by ErikaSlovakia »

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
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Post by Cece »

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
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”