This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,
Starting this trial path has made me wonder if anyone, in any stage of the trial has had or suspected they were in the "progressive ms" group. Were any of the initial phases open to progressive patients? What were the results etc.? I have long suspected I was in the progressive group. I have never had any remittance since my diagnosis (nearly 8 months), only slowly worsening symptoms. I have never been given a definative RRMS diagnosis. In the back of my mind it had a lot to do with my desire to be in the Tovaxin trial. I had read somewhere at some point that there was reason to believe Tovaxin would work "across the board". I did share my thoughts with my clinical Neuro, if it bothered her in any way she did not respond. I also know that RRMS is a trial requirement. Boy am I questioning my decision not to use a "handle" right now. As always, just trying to find someone who may have walked this path.
P.S. Gave my pint last week, MRI's this week.
Thanks,
Lars

Hi Lars,
You're more honest than I am! I wouldn't have said a word for fear they wouldn't let me into the trial!

I can't remember who said it so I can't testify to the value of the source but I also remember reading somewhere that it was suspected Tovaxin would work in all MS phases and I'll go on a limb and say that's also my personal belief.

Considering that current treatments don't work on the right mechanisms and don't even do that very effectively, I think we'll soon realize that it's nothing more than a myth that more advanced and more agressive MS is an entirely "different animal" from RRMS.

Everyone has to make the choice they are comfortable with but I think you're doing the right thing.

Hopefully Tim will respond because he knows a lot more about it than I do but here is something from the FAQ's on his webpage.

Bob

Thanks Bob,
The good news is that my Neuros never totally seem to care what I think. It seems the RRMS diagnosis is an easier place to start for the Neuros in my life. I appreciate the honest moniker, but really I am just much to tired to beat around the bush. I have shared all of this with my clinical Neuro. I can do no more. Until someone changes my diagnosis, the RRMS assumption will more than likely be honored. I will take a look on Tims site.
Thanks again,
Lars

Hi Lars,

The white blood cells (WBCs) that attack myelin are different in PPMS and RRMS. In RRMS the WBCs are CD-4, and PPMS the WBCs are CD-8. This fact would have been apparent to the people testing your blood for MRTCs.

One of the original patients in my study was diagnosed as SPMS, but her blood profile revealed that she was PPMS. She was allowed to stay in the study, but she was not part of the data. If it is determined at some point that you are PPMS, I assume you will continue to be treated. My guess is that you are not PPMS.

_________________
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.

Hi Tim,
I want to understand what you are saying....both RRMS and SPMS are CD-4 driven and PPMS is CD-8 driven?

Next question....evidently the Tovaxin detection process detects CD-8's (PPMS) but is it thought that irridating these CD-8 mrtc's and reinjecting them might still provide favorable results?

Thanks,
Bob

Hi Bob,

There is obviously a lot more to learn about the different forms of MS. Besides no longer having the remission phase of RRMS there may be some other mechanics at work with SPMS. The majority of research has been done trying to understand the hows and whys of RRMS. PPMS and PRMS (primary relapsing MS) seem to be very different than the other forms of MS.

I have focused my attention on RRMS and have not read much about the assumed mechanics of SPMS, PPMS, or PRMS. I probably should spend some time studying the other forms, because I seem to have had a fairly aggressive form of MS. I have the diagnosis of RRMS, but it was thought that I had possibly transitioned into SPMS almost immediately. I had several attacks in rapid succession with no apparent remission. My blood profile is mainly CD-4 WBCs but I did have some CD-8 WBCs.

When I was moved into the mid-dose group, my MRTCs dropped to zero. Because I have a line of WBCs that are associated with PPMS, it seems probable that Tovaxin will work for PPMS, but since it is quite different, you may need to do more than eliminate the MRTCs.

My study recruited both RRMS and SPMS. I don't know how many were of each type, but the 92% reduction in attacks was for all patients. This would indicate that Tovaxin must work for SPMS. Also if it is true that I had already transitioned into SPMS, that adds a little more credence to the hope that Tovaxin will work for SPMS.

Every answer generates 10 more questions. I have many unanswered questions. I hope that this study will answer some of them.

My brothers have updated my site http://ihavems.com/ or http://66.34.49.169/ with a section of 20+ FAQs on MRTCs. They also added a few new pictures to my timeline followed by this statement.

I hope to read lots of interesting stories posted on the web, but for me, I will quote that great orator, Porky Pig, "Th-th-th-that's all folks!"

_________________
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.

Is this something labs apart from Tovaxin trial centers can test for?

I read those stats and I just have to start praying. My MS seems to really be at the tipping point where bad stuff is starting to happen. If I can only hang on until November, maybe I can get the drug.

I will tell you that my post about exercise and relapses has helped me enormously. I have backed off to light exercise (I actually quit when my body said enough; interesting concept for me ) and after only two days my feet feel better and my legs are not nearly as wobbly. In the words of Veruca Salt "I want Tovaxin and I want it now!".

Thank you so much Tim-- the FAQ on MRTCs on the website is especially helpful and informative. Do you know why the researchers believe that they'll be able to isolate sufficient MRTCs to make a vaccine for 95% of the people with MS?

Hi To All,

I am told that the URL for my site is acting a little finicky. If you wish to visit the site and the http://ihavems.com/ does not work, you can use the IP address http://66.34.49.169/ My brother tell me that it is an AOL problem and if you are using Internet Explorer there is no problem.

_________________
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.

Hi Tim,

Your site worked fine for me last night and just now.

If you get a chance to take a look at your site....the last few pictures seemed they should be labeled 2007 instead of 2006.

I can't tell if some of your comments meant that you are finished with your webpage or finished with thisisms.

If you're finished with thisisms I want to say that although things got off to a bad start, I can't thank you enough for originally making Tovaxin visible to a lot of us when it wouldn't have been otherwise and for having the guts to come back and help make our entrance into the IIb a more educated decision.

I'm like Lew in that I just want to get this year of possible placebo over and done with so that she can get on the real thing.

Bob

Hi Bob,

The website will remain up, but I don't think anything new will be added to it. My story is old news. There are lots of new stories out there.

You know I hate to post. I will be around and you can always contact me. I hope to cut way back on posting. Like my 4-day rule, I have another rule -- 1 answer always generates 10 new questions.



Oh darn, the 6 is just too close to the 7 on my keyboard. I will have it changed.

_________________
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.

Hi Tim,
Yes you've made it pretty obvious, which I've found a little surprising. If I do say so myself, thisisms is gaining kind of a cult following due to all the hot babes that hang around here, and with you being an eligible bachelor and all......
Bob

It must be expensive for a centrifuging lab to isolate WBCs. But if they could or would, can the different WBCs be used to confirm a RRMS vs PPMS diagnosis?

We need a hematology expert.....

Smilingface, I wasn't comfortable with that CD-4 and CD-8 thing and in reading Tim's comment a little closer I notice that he isn't specifically stating that the amount of CD-4 or CD-8 cells is a determining factor to differentiate spms from rrms, although that is the way I too originally read it.

Tim probably won't be around for a couple of weeks and at that point we may find that he had some specific reason for mentioning CD-4's and CD-8's but in the meantime it seems important to remember that the definitions of the different phases of MS are nothing more than the arbitrary inventions of us humans and the disease process isn't obliged to provide us the means to document them as separate biochemically.

Bob