Im in Shock !
My only hope is now crushed!See my other posts I didnt have much hope anyhow...My person that looks after the study Says its not working and its over.almost 3yrs of agony.It doesnt work,Once I stop the tears I will be on again, sorry to the people that followed my posts...
Jim

I really don't know what to say to you about your despondency because those of us who have had this disease for years have learned to not count on something still in the trial stage.

There are at least a handful of other drugs for SPMS in the trial stages which may be helpful at some point in time. Once I read about these drugs I tend to ignore them until some new info is out on the trials. So far everything has bombed, which is why I don't count on anything happening soon that will make me better.

It is my opinion that a drug that will REALLY help will not come into play until the basics behind disease causation is found. There are tons of beliefs out there as to what may cause MS, but so far only abstract theories exist not scientific certitudes.

The only drug I have seen discussed for SPMS patients that appears to help is LDN. There is some info on this board about LDN, so it might be a place for you to research the drug.

You may have a long road ahead with minimal treatment, as many of us do, so figuring out how to remain sane through your life will be the biggest contribution that you can make to your well being.

gmi

I don't believe anymore. I used to, but have seen too many promises turn to nothing. As PPMS, I fear when they find something, it'll be too late for me, so grabbing all the gusto I can now. But I hope for those to come. They erased Polio in my time, they just have to keep looking for MS answers.

So sorry for your shock and sadness, Jim. I hope something happens soon to bring you back to laughter..

LDN is not a bad idea. It might make you feel better??

I hesitated getting 4-AP rom compounding pharmacy. Didn't want one more not to help. LDN is all I have left. (and stem cells, but I won't leave country)

hugs to you! it was certainly worth the effort, the trial and error and yes, even to know it doesnt work. I too had hopes for this, but have learned like the rest of the crowd here to not pin all my hopes on hopeful things.

Hang in there, you will get thick skin like the rest of us.

I too want to lay down my needle, and walk away from this stupid cruel disease. One day it will happen. one day.

If Only, we could just walk away..

As the others have said, I also feel your discouragement. It seems we with spms are pretty much hung out to dry until they get a better handle on this disease......but........there's always hope! That miracle just might come along when nobody is expecting it!!! All I can say is, keep reading about new trials, etc., but try not to pin all your hopes on each one. Guess it's better they find out it doesn't work or has a problem before they use us as their guinea pigs!!!!

Kicker -- What is 4-ap? Was reading about someone trying it on an MS board from England, but don't know what it is other than it has to be compounded. It's not LDN, is it?

Hang in there!!!!

I did, many years ago.

4-AP (pardon me while I hijack this thread a moment Jim) Brand name Fampridine, not FDA approved but available from a compounding lab with Dr.'s prescription, A neuro thing that helps some, not others (Me in particular). Also sold as a bird poison (as I affectionately called it) which works by attacking bird's nervous system. It made me tired (others may get hyper & anxious) and "dis-connected. I was glad to discontinue when it didn't work.
Back to Jim's thread. I too had hopes for Mbp8298 and followed your thread with great interest than heard the news. Rituxin trial failing made me sad too.