Does nothing help Progressive forms of MS?

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Does nothing help Progressive forms of MS?

Postby Daisy3 » Tue Jul 27, 2010 9:47 am

I have been doing a general internet search about what people with the progressive types of MS can do. Even CCSVI seems to be more useful for those with RRMS. That's great if you have RRMS, but what if you have the progressive form?

What have you guys found to help you? I am getting increasingly scared of my husbands leg weakness. I can't believe how worse it has become in just one year. If it carries on like this then he will end in a wheelchair.

Getting ready to pretty much try anything that has helped somebody..so please share!
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Postby patientx » Tue Jul 27, 2010 12:46 pm

Sorry, I can't speak from experience what helps with PPMS.

However, there is an ongoing trial of trying Fingolimod (FTY720) in PPMS:

link

Since this is about to be approved by the FDA (under the name Gilenia), maybe your husband could get a prescription and try it.

Another study is looking at a supplement called Idebenone for PPMS:

link

Although I don't have PPMS, I bought and have been taking this supplement. (It's not easy on the wallet, however). Some of what I have read about Idebenone says it is a synthetic very similar to CoQ10. I was just going to buy some CoQ10, but then I came across some information that said the Idebenone is actually preferred (if you're interested, I can try to dig up the reasons why.)
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Postby Daisy3 » Tue Jul 27, 2010 3:04 pm

The idebenone sounds interesting..

The website I went on said that its not allowed to sell it to the uk?!!

Thanks Patientx:_)
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PPMS

Postby joge » Wed Jul 28, 2010 2:46 am

Hi,

PPMS since 2005. Got angioplasty two months ago. Works for me! Look at forum CCSVI. :D

e.g. http://www.thisisms.com/ftopict-12347-.html
I'm ready, I'm ready !
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Postby patientx » Wed Jul 28, 2010 6:51 am

Daisy3 wrote:The idebenone sounds interesting..

The website I went on said that its not allowed to sell it to the uk?!!

Thanks Patientx:_)


Not allowed to sell in the U.K.? That's odd. I bought mine from this website(it's in the U.S.):

http://www.a1supplements.com/Idebenone- ... 19125.html

They seemed to have the best price, for the number of capsules and the size of each capsule.

I will say, in the trial they seemed to think very high doses will be needed to have a neurological benefit. I felt their dosage would have been cost prohibitive for me, so I settled on 360 mg/day (2 capsules). This is my own thinking, so take it with a grain of salt.
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Re: PPMS

Postby Daisy3 » Wed Jul 28, 2010 12:45 pm

joge wrote:Hi,

PPMS since 2005. Got angioplasty two months ago. Works for me! Look at forum CCSVI. :D

e.g. http://www.thisisms.com/ftopict-12347-.html


Hey Joge,

Thats great:_) My husband actually has RPMS, but its all progressive so...just wanted to know..

How long has it been since your procedure?
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Postby Daisy3 » Wed Jul 28, 2010 12:46 pm

patientx wrote:
Daisy3 wrote:The idebenone sounds interesting..

The website I went on said that its not allowed to sell it to the uk?!!

Thanks Patientx:_)


Not allowed to sell in the U.K.? That's odd. I bought mine from this website(it's in the U.S.):

http://www.a1supplements.com/Idebenone- ... 19125.html

They seemed to have the best price, for the number of capsules and the size of each capsule.

I will say, in the trial they seemed to think very high doses will be needed to have a neurological benefit. I felt their dosage would have been cost prohibitive for me, so I settled on 360 mg/day (2 capsules). This is my own thinking, so take it with a grain of salt.



I'll have a look at that site then. I thought it was odd being told that they could not supply to the UK
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Postby tsoft » Thu Jul 29, 2010 12:34 am

May be you must find someone to send you the idebenone as personal gift.
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Postby gainsbourg » Fri Jul 30, 2010 2:33 pm

Have you looked into alternative treatments for PPMS? The ones that come to mind for progressive MS are venom (for example bee stings):

http://www.wendys-ms-site.com/beevenom.html

I'd also seriously consider trying Prokarin or Kalawalla (Elaine DeLack's histamine treatments)

http://www.elainedelack.com

Incidentally, idebenone also seems to benefit people with Friedreich's Ataxia - a disease that often mimics MS and has many similar symptoms. Friedreich's is caused by faulty iron metabolism.



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