This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Bob,

After the results that your wife and others have seen, they will be singing about someone other than me. http://www.thisisms.com/ftopic-4133-0.html I know one person only by numbers/letters whose EDSS has dropped from a 6.0 to 2.0. I don't know his/her name, or maybe I would have said "I wonder if the lack of a major "NNNCCC" story has everyone wondering and retreating until some bombshell news is posted".

Results will vary.

_________________
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.

oo

That's absolutely true Bob. I think I was recruited because of a "early case" if you will. The problem has been that this year my MS has absolutely kicked into overdrive. I'm hoping to see some good results but Tim continually brings us back to earth which has been invaluable in potentially saving us all from a massive letdown. I'm hoping big time because at the beginning of my trial I was running 3-5 miles daily. I literally can not get a mile in now and the 1/2 mile I do run feels counter productive (I do it anyway because I tell myself if I can run at all, that it hasn't "won"). This has all happened this year. I was going along on my merry way knowing that I had MS but not really feeling it. That has changed so I would love to see some good improvement based solely on the hope that since all my activity has been recent, I could maybe be in a position to have some repair take place.

However, guys, I (who got my medical degree from K-Mart, you understand) think all of us are going to notice substantial improvement when this never-ending heatwave breaks. For the couple of days we enjoyed "normal" temps, I regained that "lack of fatigue" feeling--the temps soared back into the high nineties with matching humidityand I was ready to drop in my tracks.

So for some major thread-drift, how 'bout let's compare notes when we don't need gills to breathe?

WHY COULDN'T IT HAVE BEEN GLOBAL COOLING???????

_________________
Jane the Pain

oo

I agree. I messaged back and forth with Tim about that and he informed me that the CRABS take 6 months to get geared up in your body anyway, so why get out now. I am of the same opinion also, but if I don't see a change next year I'm going to have to try Tysabri or LDN or something.

I have no confidence in the CRABS at all from a cost/ben ratio either. My Dr. and I took me off of Avonex because it was causing me bad depression and my flu symptoms got worse over time rather than better. Shortly after I was off of it, I quit feeling that way and have not looked back in that regard even though I'm alot worse MS wise than I was when I was depressed. To me, it just "felt" like it was ravaging my insides. I never tried Copaxone, but the stats are marginal at best and at that time I thought I could just keep it at bay with a healthy diet and a kick ass fitness regimen. That obviously didn't work either.

It's ironic that the thing that made me eligible for Tovaxin was NOT being on a CRAB drug. If I would have just trusted the ads and the hype, I would have gotten back on, but when I really read the trial results, it was abundantly clear that the efficacy is there for some, but not for most and that's when I asked my Dr. if he had heard of Tovaxin. I had Tim's entire webpage printed out for him (like he would have taken the time to read it ). Anyway, even though it's been a tough year, and it's not over yet, I feel I made the best decision for me. I will have no basis to feel that way until I get on the extension, but at least statistically it seems to be effective in a much greater group of people.

oo

Bob,

That is the Revimmune trial (high dose cyclophosphamide trials) that I had mentioned in my last post. Does sound promising, especially for those who do not qualify for the Tovaxin trials. My husband's doctor is going to discuss Tysabri with him at his next visit. It is not our first choice, but he does not qualify for Tovaxin (SPMS). One of the reasons Tovaxin is appealing is that it does not appear to cause harm to your body, as does Tysabri and some of the other treatments.

I didn't make the cells (or enough of them) for the test and I'm on both Copaxone and LDN. I was on Avonex but when I started shaking I figured it wasn't working anyway so I quit. It's how I found Tim's site. I was looking for something else.
Anyhow I got the LDN and I stopped shaking. If I don't take it I feel like crud. I take the Copaxone to make my Neuro feel good. Either way my Brain MRI looks good, but unfortunately I got a good deal of Spinal Cord damage, and that was right from the get go.
Bob, as far as what you are talking about, well....bubble boy me! HA!

oo

Hey Bob,

I was looking at the Revimmune stuff and it looks like it's in Phase III in Europe but I'm not finding anything about it here in the states. I did see something about it being approved in 2009 but I got no clue.

I'm looking around some more but wow that seems risky.

Is it more risky than being on a drug that continuously supresses your immune system? I think four days of intensive treatment with cyclophosphamide would be better.

oo

So in all of my researching today, am I right in assuming this may be out before Tovaxin because it's a known drug?

oo