This Is MS Multiple Sclerosis Knowledge & Support Community

The Dr. is having a meeting at Opexa this week about the cases (mine) that haven't responded the way they expected in the higher dose category or haven't responded regardless of the dose. I should know more by next week and if appropriate I will post info soon. Thanks.

Maggiemae,
I actually met two other Tovaxin patients on my first injection visit. We were in the same room and spoke openly about whatever we chose. I felt like I shouldn't initially but it was obviously not a problem with the staff. I am hesitant to relay any information from those conversations but we did speak of this forum and hopefully some info from my clinic com padres will make its way here. How 'bout an update post from my new friend, you are now in a select group of people with insight for those watching and waiting. No pressure though. This is where I should insert that smiley guy thing, but I just can't.
Lars

Lars,

"you are now in a select group of people with insight for those watching and waiting"

That line says it all. I tune in every day, just watching and waiting. I hope more people in the Tovaxin trial will give us some insight into how they are doing. It would be great if there was a way to get the word out about this site to all those in the trial.

I told one person that was being initially dosed the day of my last shot about this site, but I don't think she has ever posted. I'm just 4 months away from the extension. I'm still not seeing anything at all except some occasional flare ups and will reserve my feedback for after I start the extension. My problem was that I was having a relapse when this trial started. I keep getting new symptoms, like spasticity in my legs, but my Doc. thinks it is from what he calls old injury from the last flare up and not a new relapse. I have levelled off here lately and started exercising again. I can get about a mile and a half in before I feel wobbly and have to stop, so I may be experiencing a stop in progression but just had more behind the scenes damage that shows up when I get hot.

Hell, I don't know, but I don't want to post on anything until I see a significant change. I think some people who experience "getting better" may be just coming out of a flare up. It's just so hard to tell, and remember, this stuff isn't meant to make us better, just stop the progression.

I have seen icreased spasticity too. It has shown up in the last year while in the trial. Both initially and the re-treatment phase. I invite anybody who isn't seeng slowing down or stopping of the progression to share that on this forum or through a pm. I hope that the Tovaxin vaccine works better on others than it has for me but if there are others that have seen worsening symptoms please share it with all of us. Thank you.

havingms wrote:I have seen increased spasticity too.

Howdy all,

I have my last injection in early September and things continue to be very stable for me. As I described in another post, I have had some noticeable gains in overall stamina, balance and other subtle improvements. I'm not back to playing racquetball or running by any stretch but things are definitely better. On the subject of spasticity, when I started the trial I was taking 40 to 50 mg of Baclofen (4 to 5, 10 mg tablets) a day. Over the last couple of months, I have been weaning off of Baclofen and now I take 5 mg at bedtime, which prevents nighttime cramping, and occasionally I take 2.5 mg mid morning.

As always, your mileage may vary,
Mike

my Doc. thinks it is from what he calls old injury from the last flare up and not a new relapse.
I may be experiencing a stop in progression but just had more behind the scenes damage that shows up when I get hot.

Well, I have been rockin right along without much going on until recently.

When I get out in the heat my legs have been getting tingly. When I get back inside and cool off it goes away. Yesterday, however, I noticed part of my stomach was numb (about the size of a plate to the right of my belly button.). Not MS huggy like to last time this happened, but still noticable.

The tingly legs was definately a psuedo attack, but what about this stomach thing? Could this be old injury from an attack that happened over a year ago, or is this a new attack?

I had my 5th injection in May and my year is up in November. So far this is my 2nd "problem" since being in the tovaxin trial. (I had a very mild case of optic neuritis (possible old injury) in March. )

The good news is that both of these "problems" have been relatively mild, but for all of our sakes, I kind of hope I'm on placebo.

Good luck to all.

Heather

P.S. I do still believe in this drug and for the record I'm not dropping out.

I hate to be blunt, but unless it got a whole lot worse aka MS hug, I'd deal with it. Trust me you will get used to it Keep up the good fight! Remember, if you were doing nothing, that would be bad. At least you are putting up the fight!!

akaheather wrote: P.S. I do still believe in this drug and for the record I'm not dropping out.

That's good to hear Heather!

Tim's four day rule seems to make a lot of sense. Have any of these recent symptoms lasted more than four days?

Bob

Mine have lasted longer. I use that rule like a mantra now, so if you see me post about a change, you can count on the fact that it has lasted longer than four days to a week. The heat stuff just kills us and I have had to accept that. I went on our annual fourth of July camping trip a few weeks ago and my legs were so rubbery the whole time it was miserable. Once I got back home and got back into my routine (which does not involve being outside 24/7) I was back to 'normal'. However, the spasticity has continued and gets worse when hot. That's just part of my new normal, so I have to learn to deal with it.

For some reason, my upper body has to this point, been unaffected by MS. All of my symptoms, save for me eyes, are from the waist down. Bladder, bowels, spastic and weak legs, tons of tingling when I walk any distance at all, numb feet, etc. My Dr. says that is due to my spinal lesions. In the Tovaxin trial, all we are looking at are brain lesions. I really can't wait until this is over so I can get a spinal MRI and see if I have had progression there. Not that I can do anything about it, but it would be nice to know. I get the numb patches also, but they usually don't last more than a day, so I ignore them.

Like I always say, come on November!

Dear Loobie,
Ditto! I second all that you have said. Our experiences sound almost identical. Cant wait for the fall.
Take care.

havingms wrote:Dear Loobie,
Ditto! I second all that you have said. Our experiences sound almost identical. Cant wait for the fall.
Take care.

Hi havingms,
I don't understand?? I thought you had been in the I/II and have been on the real treatment the whole time?
Bob

Have any of these recent symptoms lasted more than four days?

Today is day four and the stomach is still numb. I did call my neuro's office today to report my new "symptoms". The nurse I talked to seemed to think it sounded like an old injury exacerbated by heat and fatigue. I hope she's right. It HAS been hot and I've had family and friends visting for the last 2 weeks so, it is highly likely. This is the first summer, since I was diagnosed 3 years ago, that the heat has bothered me. It sucks.

I have an appointment next week so I will keep you posted. (I think this is visit #15 for the study?)

I hope this stuff is working.

Heather

akaheather wrote:I did call my neuro's office today to report my new "symptoms". The nurse I talked to seemed to think it sounded like an old injury exacerbated by heat and fatigue.

Hi Heather,
Mechanically, I guess I've had too simplistic view of the damage done by MS. Possibly everyone has but I'm only familiar with my past impressions. Recently on a thread in the general forum finn had me read a recent Neurology article and, if correct, the damage goes WAY deeper and more extensive than I'd imagined

Neuropathologic studies of GM involvement.
Although MS is generally considered a disease of
WM, pathology can also be found in the deep cerebral
nuclei2,4 and cerebral cortex.2,5-10 Cortical MS
plaques may be abundant in some patients with MS

and MS affects parts of the brain I'd never heard before and hadn't previously imagined

Atrophy of the deep gray nuclei also occurs
in MS and is disproportionate to the amount of
global atrophy.23,29 Volume loss of the thalamus4,29
and the caudate nucleus23 has been documented using
MRI segmentation (figure 5). In the thalamus,
there is substantial neuronal loss, depletion of neuronal
metabolites, and a 22% loss of neuronal density.
4 These observations are consistent with PET data
demonstrating hypometabolism of the brain affecting
cortical and subcortical GM more than WM.30
With use of voxel-based morphometry (VBM) from
MRI scans, a recent study31 of 51 patients with
RRMS and 34 control subjects showed that GM volume
was significantly decreased in the frontotemporal
cortex, precuneus, anterior cingulate gyrus,
postcentral gyrus, and caudate nuclei bilaterally.
These results suggest that in RRMS, GM reduction
preferentially involves frontotemporal and deep central
GM. Another VBM study also reported significant
volume reduction in temporal and prefrontal
cortex.32 VBM will likely emerge as an important tool
in understanding the topography, time course, and
clinical relevance of GM involvement in MS.

I guess my point is that even if you were on the real thing and the disease process is stopped or stopping, things might be a lot more complicated than I originally thought and who knows how long things like what you mention might pop up from stress, heat, etc..?? Maybe always.

Bob

I believe that is a valid assumption Bod. Currently, axonal damage cannot be repaired (at least that's what I've read). Myelin repair can happen, but not axonal, so whatever we have will probably always linger. Hey, if it quits screwing us up, that's the start, but I think we will always be heat affected and maybe gain back some lost function, but maybe not close to all.