This Is MS Multiple Sclerosis Knowledge & Support Community

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Lyon wrote:

ewizabeth wrote:I know that extreme stress can cause a relapse in me, and combine that with consuming plenty of junk food and it's a recipe for disaster.

Thankfully this is one subject that I'm glad I'm naive in! Jamie's just had the one exacerbation back in Feb of this year and come to think of it I don't think she's been sick once since then and OBVIOUSLY living with me there is never a reason to be stressed out

Bob

I had two very bad relapses in the beginning, about a year and a half apart. I've had milder relapses since being on treatment, and slowing down/taking better care of myself. But I have permanent damage that stays each time. If I get a fever, I can hardly walk and have bladder problems. I had a mild relapse this fall that made my right hand permanently weaker. I didn't call the neuro about that, told him at the checkup appt. I can't do that while in the trial. They NEED TO KNOW if I have a problem. So, if I get numb eyelashes, I'll be calling the office.

I hope Jamie never has another problem. It would be awesome if she was in the trial, and had the real thing, and never had another inkling that she has MS.

Lyon wrote:... is "clonus" a typo? I've never heard that word before and can't figure out what it is.

Nope, no typo, although you made me question if i spelt it correctly...
http://www.mult-sclerosis.org/clonus.html

Mine is mainly in my knees, and to kick it off I simply stand and then slightly bend my knees. If you think for a while about the walking action, you will understand how bothersome this exact disability can affect you.

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Lyon wrote:Someone mentioned the other day that IF Opexa manages to get the mrtc detection process up to 95% that would be akin to a test to detect MS and that seems true to me.

I was previously mis-diagnosed with a condition abbreviated to CIDP (Chronic inflamatory demylinating polyneuropathy), which is basically where the peripheral nerves (ie not CNS) are attacked by the immune system. As such, I would guess the test for mrtc's would not be able to differentiate between CIDP & MS like an MRI could? and I would further guesss that CIDP & MS are not the only two disease with possible mrtc's. I guess one would have to find mrtc's in the CNS with a lumbar puncture or something to head for an MS diagnosis. A lot of guessing...

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Lyon wrote: I hope your results defy what seem to be the odds flipflopper!

Thanks Bob!

Lyon wrote: We're going on the 27th of December so if anyone has any questions I might ask them, let me know.

It is very possible that you might not get a chance to read this before your appointment. But, if you get a chance, I have a question for you. You could say that you heard that a lot more people are testing negative for MRTC’s than what was expected. If that is true, do they have any additional details as to why this could be occurring?

Thanks!

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Bob,

How did Jamie's appointment go? I hope it went well...

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Lyon wrote:Hi flipflopper,
The person I talked to said that "they" (evidently someone from Opexa and someone from each remote facility) have an audio conference every week and going into the trial they were expecting 55% mrtc detection and 45% not, more or less 50%, and that they are experiencing right around 50% mrtc detection.

Thanks for asking my question! During my appointment, I was told that Opexa was expecting about 50% mrtc detection before the trial started. But, I was told that the mrtc detection for this clinical trial was much lower than 50%. I will keep on reading this board to hear more about the trial and I will hope that everyone who has been accepted does exceptionally well with this vaccine. I hope that they are able to make a vaccine for your wife (and on the first try) Bob.

Lyon wrote:It went really well.....and I didn't get lost on the way this time

I thought they were only going to redraw the blood, do the peg and numbers tests but they re-did EVERYTHING including the EDSS assessment. We left before the numbers were tallied but I get the idea that it's going to be lower than the 3.5 she got last time.

I also found out that in case of a relapse during the trial being unblinded and going on Tovaxin is not an option. The option is that you can be treated with steroids and stay in the trial. Things were too busy to ask but that of course begs the question, how much is steroid treatment going to affect isolating mrtc's the next time if steroids really do "mask" mrtc's?

Bob

Thanks for the report Bob. It sounds like they're treating Jamie very well, and that's good.

I would suppose that if you're having a flare-up they're going to treat it, and then if the MRTC's do go down, you might have to wait a few months for your next vaccine draw?

They have to see the evidence of any relapse because it helps in the comparison between placebo and the real thing. So if you're on the placebo and keep relapsing, they're going to keep treating it as needed. If you're on the real thing and relapsing, they need to know that too.

It's part of the risk we take being in the trial, but at least we can get steroids if we need them.

I personally will not take steroids unless my symptoms get pretty bad. That's just me though. I might have a change of heart if I'm on the placebo though with a relapse. My blood pressure goes way up with steroids, and I'm not my old cuddly self either. So, if I get the placebo and have the relapse, I might not only need steroids, but also enough blood pressure pills to knock out a gorilla.

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I'm new to thisisms.com and I'm reposting my post from the Drug Pipeline Tovaxin Press Release area earlier tonight. This is a great site for people with MS (and family and friends). Here's my original post...

Just wanted to introduce myself. I'm a 36 yr old happily married male and was diagnosed with MS a few years ago. I tried doing every natural thing in the book for the first year and change but I just kept getting hammered by this rotten disease so I started taking Copaxone but was only able to tolerate it for about 3 months and then stopped. I've been searching the internet trying to find more information about this new drug (hopefully I get the real thing) Tovaxin that I should be receiving at the beginning of 2007. All I could find was Tim and his website and then I found this ThisIsMS.com website. I had my blood tested at the beginning of October and was told that my T-cells qualify for the study and then went back to give a bag of blood in Mid-October to be sent to Texas. I will do my best to update everyone on my progress once I start receiving Tovaxin, keeping in mind that I have a 67% chance of getting the drug and 33% chance of getting the placebo. I hope this drug works as well as my doctor says that it should because I agree with someone earlier who posted in this forum that said something like "I am interested in adding life to my time, I'm not interested in adding time to my life".
I also want to encourage everyone that comes to this site that currently has MS to pray and keep your attitude positive as much as possible and know that it really does help. I also want to encourage all of the friends and family members of people that have this cursed disease (I tell MS where it can go everday!) because you are all truly special people if you are gracious and merciful to those with MS. I pray for all of you with and close to MS.