This Is MS Multiple Sclerosis Knowledge & Support Community

Sweetyhide,

First of all, I love your avatar . I really liked reading your post because I now know that someone else is going through the same crap with the constant wondering! That really is for the birds isn't it? That is one thing I really did not see going into this. Not that I would have been even remotely aware that it would be an issue and I know I still would have enrolled even knowing it, but it does suck.

I am really glad to hear that you are seeing improvement. I am going to go check out your blog now.

Take care,
Lew

Bob,

I sure wish I knew how to quote on this thing.

Back in March (after my 4th shot) I did have a small relapse. My vision went blurry, but it was relatively mild and only lasted about 3 weeks. Since then I have felt pretty good.

After reading Tim's post I was a little reassured. Maybe this was my body's last ditch effort to kick it's own butt.

I'll keep my fingers crossed.

Heather

P.S. I'm really wondering if that relapse is even going count. The MRI's have been spread apart such that I don't even know if that relapse will show up. ????? [/quote]

akaheather wrote: I sure wish I knew how to quote on this thing.

Hi Heather,
It takes a while to get used to it! The easiest way is to click the quote button in the message you want to reply to and delete the wording that you don't want to respond to.

P.S. I'm really wondering if that relapse is even going count. The MRI's have been spread apart such that I don't even know if that relapse will show up. ?????

It's hard to tell. I don't think a lesion can form and dissapear quite that quickly?

Bob

Okay, I have some new news.

First of all, the 5th injection went well. There was a slight flush around the injection site which lasted about 20 minutes. I don't know if that can be considered a red mark or not. Other than that, it was fairly uneventful.

My next visit will be visit #14 and I will get an MRI at that time. We will also get MRI's on visit 15, 16, and 17. Visit 14 is one month after our last shot, but I have no idea when the other visits will be scheduled.

I did ask my neuro about he MRI's and when they, or we for that matter, can expect to see results. He confirmed my thoughts and said that every MRI prior to the one we get on visit 14 will be considered as part of our baseline data. The data collected in these last MRI's will then be compared to the ones taken both before and during the injection period.

I hope this information helps.

Heather

That does help, thanks Heather!

Although it's probably a matter of semantics regarding what they consider the baseline, it does sound like they're more interested in the long term results....which makes absolute sense.

Bob

Hi to all,

Last Friday was treatment number 17, and I still have never had an injection site reaction. http://www.thisisms.com/ftopic-3409-day ... asc-0.html , but I am sure everyone is still hoping for one to occur after they receive a treatment.

I watched the process a little closer this time. Since the injection is just under the skin, subcutaneous, I did see a lump appear as the stuff was pumped in. I don't know how long it took for the lump to disappear, but it was gone before I went to bed.

Three days later is when I am asked if there is any injection site reaction. I assume that any visible signs that appear during the first several hours and are gone before you go to bed are not what they are looking for, but you should mention such an occurrence.

Since I have never had an injection site reaction, I am probably not qualified to comment on what constitutes one. I assume a redness or rash that persists for more than 8 hours (pure guess) and occurs within the first 3 days would be an injection site reaction. I won't add that to my list of rules.

The 4-day rule -- it is not an attack unless it lasts more than 4 days.

The 2 assessment rule -- if you EDSS changes and stays changed for 2 consecutive assessments, it is for real.

The 10 question rule AKA the Lyon rule -- every answer generates 10 more questions.

But I think Bob's amp goes to 11.......................

.

New rule -- If more than 60 minutes goes by without Lyon responding to a new post, call 911.

Bob, I was starting to worry, but you came in just under the wire.
My Post -- Posted: Wed Oct 24, 2007 3:50 pm
Lyon -- Posted: Wed Oct 24, 2007 4:50 pm

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I like my phone booth. I think it is rather understated and matches my beard. A good hiding place for, as you put it, a tall skinny red head.

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Tim,

I have been paying attention to your story for a long time. There is something I have been wondering for quite some time and now I decided to post my question.


The improvement in your EDSS is quite impressive! You also say that you are now stable. What I am wondering is what do your MRIs show? I’m sure you’ve had some MRIs since you started the treatment. Can you tell us if there is any sign of activity in your MRIs since you started taking Tovaxin?

Hi Alexisss,

What I am wondering is what do your MRIs show?

I think anyone in the study could answer this question for you. They don't give us that information. The only information that a patient is given that relates to the study is his/her EDSS. They also tell you if there is anything above or below normal range in your blood profile. Things like cholesterol, glucose, etc.

I'll second that. My neuro. says that it would be up to me if we want to schedule an additional MRI to see what's going on. He is hesitant since he knows how much time we spend in the tube during this study, but I asked if he had access to any of the MRI's and he said not unless we schedule an additional one over and above the 6 or 7 you get a year for the study.