This Is MS Multiple Sclerosis Community: Knowledge & Support

Ok,

I'm ready to update again. I have really waited this time since I was pinging off of on so many false alarms. I have used the 4 day rule suggested by Tim (it's good advice when self monitoring) and have lots to talk about.

The amount of changes are huge to me. I'm either seeing some results or I have the biggest placebo effect ever encountered. As some of you know from my previous posts my big symptoms are as follows:

optic neuritis with bad Uthoff's symptom. Any effort exerted causes severe fogginess as well as heat.
bladder issues in that my bladder is always full since I void so little per potty break and am peeing all the time including at night.
Bowel issues with chronic constipation
Tingling and numbness especially from the waste down
Bad balance

Here is what I have realized over the last few weeks:

My eyes are by far my worst and scariest symptom. They normally "go out" five to ten times each day and up to the time of the trial were staying out most of the day. Yesterday I had NO bad eye time. This is hugely significant since I had to work on my feet all day in front of a friction bonding press which has a platen temperature of 450 degrees F. They went out a little, but normally when I'm around this press I can only make out things that I already know. I can't pick up faces very well and have to really focus on anything new in the environment I'm in to make it out. Then today they didn't go out in the shower. That has NEVER happened. Another also happened today. I love music and listen alot in my car; especially when alone I listen to it loud. I was listening to "Photograph" and singing along loudly (this always causes my eyes to go out) and I realized when I got home that my eyesight was fine. I actually started weeping.

The next big change is my balance. My balance is ok except when I try to navigate through a crowded area or a cluttered area. Then I have to constantly hang onto stuff so I don't fall over or stumble. The worst scenario is going up and down and into bleachers. My daughter is very active in sports and I have to sit in bleachers alot. I don't go up in them anymore since I have to put my hands on everyone I go by so I just sit at the bottom or stand somewhere. Yesterday she had basketball and I went up in the stands and went down a crowded row and didn't have the urge to grab anyone and felt very stable.

I haven't been constipated in a couple of weeks with no change in diet and I made it through church today with out going pee once. This also never happens since it is the morning time and I always have a cup of coffee in me.

I know that Tovaxin isn't an "MS reverser" but I think the intent is to stop the progression and allow your body to do some healing and reversing.

This could all just be a string of "good days" but I hope not. There have been some things that have happened that have never happened even on my best good days up to this point. My headaches have also taken a break.

God I hope this is real. I feel like a manic depressive on the manic side of things I'm so charged up. I know it's not good to get so up about it since it becomes a harder fall if it proves to be only fleeting, but I just can't help it right now. The company I work for is not doing well and my wife is still in school and these things have really had me stressed out but these good things are still happening. They aren't supposed to happen when you are stressed, right?

I just feel very "solid" lately and it feels great. I have more to tell but am choosing to let more time pass before I post any more on those changes. All of my MS symptoms are not gone, but there has been significant change, and none of it for the worse so I'm feeling pretty damn good.

Take care all,
Lew

Thank you for taking the time to give us an update on how you are doing Lew! I really hope that all of what you have been experiencing has been caused by Tovaxin.

First, thanks for the update Lew. Whatever the reason, ENJOY IT!

I think my outlook on improvement of disability is the same as yours. MS is a nasty houseguest. When it leaves, it leaves the place a mess and it's up to you (your body) to clean things up.

I don't automatically associate "stopping MS in it's tracks" with improvement in disability but I think a lot of people, including some researchers, do.

On the other hand, it seems there is enough evidence to prove that improvement in disability does happen.

At any rate, keep the good news coming!

Bob

Improvement in disibility does happen if your given a break with the ms activity hence good days and bad days but if it dosen't leave you alone you get no chance to repair..

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Had ms for over 19 years now.

Hi Loobie,

I'm so happy for your improvement in symptoms!! I hope you have the real thing, and that things just get better and better. It will be wonderful if the majority of the Tovaxin recipients have similar results.

Thanks for the update.

_________________
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.

This is such BRILLIANT NEWS!!

ummm.. would that not suggest you should NOT be singing loudly while driving!!!

hmmmm... leaky nasolacrimal ducts, maybe this is a side effect the reaserches should be told about... Would hate for you to become too dehydrated and require medical attention.

Lew,

This is FANTASTIC news and is what we are all hoping to hear! I'll have to admit that by the time I finished your post I was a little teary eyed!

I'm supposed to find out on Feb. 19 an update of when I may go in for the first treatment/placebo. I was originally scheduled to go in on Feb. 23 but the process is taking longer than they expected. It's hard not to read too much into the delay, but it doesn't take all that long to make up a sugar injection.

I hope things continue to go well for you and please keep us updated on your progress. If I wind up in the placebo group I'll need to live vicariously through the good news of other folks who are experiencing improvements.

Take care,
Mike

Thanks for all the feedback. It is really different being in a blind trial. Not knowing whether the way I've been feeling is just due to the MS taking a break for a bit or whether it is the drug making it take a break is really unsettling. If I knew I was getting the goods, I think I would allow myself more enthusiasm about going forward since I would "know" why there are things changing. I'm still holding back waiting for a really bad week and for the MS to say "I was just teasing you".

I think we all have had some of our optimism about life in general stipped by this disease. It is just hard for me to "go with it" and enjoy it while it is happening since I know it could go back to the way it was before I started feeling better in a day. I am just waiting until November when I find out before I relax about it. There really is no way for me to find out and I just hope that it stays this way for a good while.

Hi Lew,
I think I'm misunderstanding what you're saying but just to make sure, you know that in the second year you are going on the Tovaxin treatment for sure but at no point are the trial personnel going to tell you whether you had been on the real thing or placebo during the first year....right? I can see where you're coming from but regardless of the reason you are experiencing improvement, you're buying time by not obviously declining until the year is over and you can get on the "real thing" for sure
Bob

You are correct sir. At no time until the one year study is done do you find out if you are on it or not. However, once unblinded we go into the extension study if we so choose. I got my first injections shortly after Thanksgiving so I am going to find out then.

Hi Lew,
Not to belabor this thing but unless you've heard something different I'm pretty sure they don't let you know whether or not you were on the real thing even after the year is over.
Bob

Bob,

I will find out soon and let you know. My next appt. for dosing is Feb. 21, so I will ask for sure. We have talked about the extension many times, but I never bothered to ask if you had to stay blinded. I can't think of a reason why you would be left blinded since the way the extension was explained to me was that everyone who was getting placebo and the people getting the drug would all get the drug if they participated in the extension so I wouldn't see the point. That's not to say that there aren't other reasons, so I will make it a point to ask and report back on the 22nd.

Lew

Thanks Lew,
I'd ask but we don't have another appointment in the near future

Bob

Hi Lew!!!
I am very happy to hear all this. Thank you so much for always keeping us updated. I hope great things just keep happening.
NN

Wow, Lew, I sure hope this is the real thing! This is very encouraging and I hope it persists for a long time, like forever! Keep us posted , it really feels good to read about your progress. Carole