This Is MS Multiple Sclerosis Community: Knowledge & Support

I did 6 months of Cyclophosphamide at a monthly rate of 1000mg, while dignosed as a RRMS case that failed TY. Since I hardly showed any improvement after the 6 month treatment, I was upgraded to SPMS.
I'm currently taking Copaxone+4-AP+Rilutek+LDN+IVSM (monthly) and seem to have been stabilized. The next big gun for me will be novantrone,
which has shown to be more effective in progressive forms of MS.

what a ride..

Regards,
Shah

You might want to check with Sarah, but I think that ABX is working for folks with SPMS. At least it is for Kim.

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

There are lots of Sarahs, but only one Anecdote.

Ken is correct, though: many people are using CAP antibiotics for SPMS, like his wife, Kim and also like me, except I have now finished treatment because it was so successful. Have a look at the Antibiotics forum and also send a PM to Katman, who found this treatment very successful for her PPMS.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

I added PI-2301 to the phase 2 list based on THIS post from scorpion.

Hi,

My name is Astrid and I am from The Netherlands.
My husband (Rob) is diagnosed with PPMS in August 2006.
Since January 2009 het is on the new FTY 720 trial for PPMS.
We are 41 en 45 years old, no kids, own business wich I run on my own now.
Rob is getting worse everyday and we think he has side-effects from the FTY (thinking because in this trail you are not sure if you are on the drugs or not).
His EDSS score is 5.0, he doesn't feel his feet or legs, arm and hands but stil can walk about 200-300 meters.
He cann't coordinate his right hand anymore and his left hand is getting worse. He always has tintling (is that the right word?) sensations all over his body and his legs and arms feel very heavy and painfull.
Het had to quit working 2 years ago and is very tired.
But... we still try to enjoy life and when it is possible we go to parties, out for dinner or to friends.

I'd like to know if there is anyone out ther who is on this new trial for PPMS.
How are you feeling?

Thanks and I hope to hear from you!
We try to continue oure life

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My husband, Rob, has PPMS, diagnosed august 2006, EDSS score 5.0. He is on the new FTY 720 trial, phase III since January 2009. We are from The Netherlands

This is an old message I know, but I don't know is has there been any further progress for pp ms? Any hope would be welcomed. I try not to get too caught up in all this but praying it will just happen, when is the probelm!

I am a Kiwi so progress is a little slow here.

The other issue I guess will be the expense once it is converted to NZ dollars.

Thanks for listening.

Greetings from NC Jam! I have been in the fingoliomod trial for a year with
positive results. My energy level has greatly improved and my neurological
testing is showing increasing strength. I feel like my progression has halted.

Fortunately, my side effects have been temporary and minimal.

Any word from anyone in Europe? The trial started there earlier by 2 years.

I am hopeful that this drug will help all of us who progress and are without
Disease modifying treatment. There are other PP MS trials such as idebenone going on but I have no knowledge of anyone participating.

Keep your hopes up.

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

From a quick check of the clinicaltrials.gov site, it looks like the fingolimod trial for PPMS is still ongoing, and they are still recruiting:
http://www.clinicaltrials.gov/ct2/show/ ... %22&rank=2

Also, they are recruiting for the Idebenone trial:
http://www.nationalmssociety.org/news/n ... x?nid=4502

This says they may cover travel expenses, so if nothing else, someone could get a trip to the Washington DC area out of it.

I would add Tcelna (old Tovaxin ) to the list with the Abili-T trial. I see that it hasn't been updated in a while.