This Is MS Multiple Sclerosis Community: Knowledge & Support

Hey Bob,
Which leads to another question, how many actual trial patients do you suppose contribute to this site? I have been batting ideas around in my head about how to attract more of those out there to get a really good picture of these trials. My head hasn't batted anything back. I suppose we will get some more first hand accounts from this forum soon. How is your wife doing? I send my thoughts and prayers.
Lars

pvns2005-goes in for first injection of Tovaxin 01/24/07-CONGRATS!
Lyon's wife- POSITIVE FOR MRTC'Ss!!
flipflopper-1 negative test/SECOND TEST POSITIVE FOR MRTC'S!!
Loobie-undergoing treatment/placebo
Libreni (asked, but hadnt decided)
merlin26
JesusChangedMyLife
hmtucker-IN
Lars-Tested positive!

Hi Lars,
At one point I was trying to keep a list but I didn't keep up with the updating very well.

I just now deleted a couple of people who didn't actually make it into the trial and added you. Other than you, me Lew and flipflopper I don't remember hearing from the others in a while so I'm not sure who else has actually gotten into the trial.

She's actually doing very well, thanks Lars! Even though I've read that older onset MS is more aggressive, her MS, so far, seem very mild (diagnosed a year ago at age 46). Although upon diagnosis her neuro said that she had "at least seven" lesion and that subsequent MRI's keep finding increasing numbers of lesions, through the last little over a year she's only experienced the original relapse which led to the diagnosis.

No one wants to potentially go a year "unprotected" but I'm coming to the realization that steroids and the crabs only offer a false sense of security and don't really slow progression anyway. In that light being in the IIb and increased disability during the year of placebo doesn't seem so foolhardy, or maybe that's justification on my part!

Bob

Bob,
I think at this point I may be the poster boy for the "older onset = more progressive" theory(45). Find myself in a bit of a pickle. I have been stubornly opposed to any form of therapy, until now. If I were not so close to a Toxaxin injection I would go in for steroids asap. I also think a clinical exaserbation prevents me from participating temporarily. Never a dull moment in this MS world. 1 foot in front of the other. Glad to hear good news about your wife.
Lars

Hi Lars,
I'm sorry to hear that. Come to think of it, I don't remember you ever mentioning how long ago you were diagnosed. Hopefully you'll get the real treatment and it will be obvious but if not is your progression so aggressive that a year would make a huge difference?

I know that doesn't sound right...ANY progression makes a huge difference, but you know what I mean.
Bob

Hi Lars,

You can add my name to Bob's list. I'm getting my 5th injection next week. I have no idea wether I am on placebo or not. 5 minutes after my third and fourth shot there was a little reddening, but it was gone when we checked again in an hour.

There is another guy at my clinic who gets his injection on the same day as I do and he hasn't had any "signs" (red mark or otherwise) that would indicate one way or another. Earlier, he did have a worsening of symptoms, but that was almost 3 months ago.

About that same time, I had a really mild bout of optic neuritis which only lasted about 3 weeks. (I say mild because the last time I had it, it lasted 2 months and my vision was way worse.) My neuro thought it was too early to make the plcebo/real deal call and I tended to agree. After all, our bodies have to learn how to fight this crap, right?

Also, it looks like they are going to compare MRI data from the beginning with data they collect after the 5 injections. Doesn't that seem like they don't expect to see improvement until AFTER at least 6 months? Well, that's what I am going to keep telling myself. Maybe I can talk myself into a palcebo effect! That would be sweet. I'll take what ever I can get!

Good Luck,
Heather

For the record,

1. I CAN spell, but I obviously cannot type.

2. Other than a rather puny red mark, I did not feel any different after any of my injections. It's kind of let down after all the excitement and anticipation. We should suggest they work on that. Maybe the nurse could blow an airhorn or applause could errupt from our seat. It definately needs something.

Thanks Heather! I remember you now but I'm not very organized....sorry I left you out but you're on the list now.

Thanks for all the info. What you've said relieves my mind a little. Although we weren't expecting any injection site reactions I guess my wife and I were expecting some immediate blast of energy or something. Maybe that doesn't happen even if someone is getting the real thing.

She's convinced she's on placebo because the tingling in her feet hasn't gone away and her speech still feels that it takes more effort than it should but maybe we have too high of expectations too soon. Her first shot was last Wednesday, the 25th.

Thanks for posting!
Bob

Bob,

If anything at all, I thought I felt a little more worn out during the few days after my my 2nd and 3rd injection. My neuro seemed to kind of dismiss it. But, it made sense to me that, if my body was trying to fight this stuff, I might actually be a little run down.

Just a thought.


Heather

Hi Heather,
Despite people talking about "reversal" of the disease process and "reversal" of disability it's been pretty obvious to me that there are only two speeds to MS....stop and forward. No reverse. The disability is a remaining present from an uninvited and unwelcome house guest.

When MS goes it leaves the disability for your system to clean up as best it can. It's not a given that everyone is going to revert back to their pre-MS condition and in fact it's highly unlikely that anyone could revert back to their pre-MS condition when considering the amount of plasticity which had been utilised before symptoms originally became noticeable.

Despite my long term conviction that stopping MS in it's tracks isn't synonymous with improvement of symptoms, when it came to my wife getting her first shot in the clinical trial I forgot about all that and convinced myself that if every effect of MS didn't immediately dissolve she must be on the placebo.

What you mentioned about Opexa going over the results again in 6 months makes sense. Obviously they aren't hyperventilating over every little quirk from day one like we are....all they are interested in is whether there is any sign of disease progression on treatment during a given time period.

Bob

Thanks Heather and Bob,
I guess I keep waiting to hear that "I felt great after my first injection" story. It sees other than Tim that hasn't been the case, hopefully its happening and we're just not hearing it. Heather, I agree that the MRI schedule seems to enforce your thoughts. I appreciate your imput and hope you start to see some results soon.
Bob,I was diagnosed Sept. 06 but had issues for months prior. As to the can I make it through the trial year question, |I would be thrilled to make it to injection time. I am going to need to see some serious slowng down of symptoms before can think further.
Thanks and well wishes,
Lars

Hi Lars,
Are you familiar with the principal of "resetting" or "rebooting" the immune system?
Bob

Bob,
All ears.
Lars

Hi Lars,
I'm not making any recommendations but I never know how complete someone's knowledge is of the options available to them.

Everyone's MS is more aggressive than they like but if you really have justification in thinking yours is more aggressive than most I wanted to mention that you might want to research the idea "rebooting" the immune system, at this point using Campath 1h or high dose cyclophosphamide which is now being called "Revimmune".

I'm at work and my break is long over but I think you'll find it interesting that the same drugs typically used for long term suppression, when used in higher doses for a shorter period seem to be able to eliminate the old immune system and it seems that a new "healthy" immune system replaces it.

Of course there are risks involve and I'm not promoting it, but in desperation I personally would surely consider it.

Bob

Bob,
I thought I had researched every possible and not so possible therapy (I thought the Dr Pepper and Banana diet had some merit). I am stunned that I haven't heard of this. After some research, the numbers on everything seem unbelievable. Isn't this everything all of us Tovaxinites have been chasing? This stuff is even claiming symptom reversal. There has to be some really huge downside that I haven't seen yet.
Lars

The downside would be a fatal opportunistic infection.

But like Bob said, drastic circumstances may require aggressive intervention.