This Is MS Multiple Sclerosis Knowledge & Support Community

Good to hear from you Ewizabeth. I was thinking just yesterday that we hadn't heard from you in a while.

Of course there is nothing good about having MS and having to face ANY treatments but it sounds like for your situation, you are considering and doing all the right things.

Bob

Lyon wrote:Good to hear from you Ewizabeth. I was thinking just yesterday that we hadn't heard from you in a while.

Of course there is nothing good about having MS and having to face ANY treatments but it sounds like for your situation, you are considering and doing all the right things.

Hi Bob,

I've been busy with a new kitten... he's a handfull, but finally getting settled in and spoiled rotten...

I hope your wife is doing ok in the Tovaxin trial? I have high hopes that it turns out to be a great treatment for those of us that have enough of the MRTC's.

I really, really hope I have good results with Tysabri. One thing the neuro stressed to me is that after even one dose of Tysabri, it will disqualify me for most clinical trials in the future...

If you ever read the exclusion criteria for many of the newer treatment drug trials, that one is right up there.

But he thinks it will only be a necessary treatment for about two years, because treatments like CDP323 are going to replace it with the same results, and taken as a daily pill instead of infusion.

He was so disappointed that I changed my mind about that trial... I know he wants the best for me as his patient though, so it doesn't bother me that he is emotional. I would rather have emotional than some of the alternatives.

Hi Ewizabeth,

One thing the neuro stressed to me is that after even one dose of Tysabri, it will disqualify me for most clinical trials in the future...

I don't what progress Opexa's scientists are making in regards to upping the percentage of people whose myelin reactive T cells can be isolated but two years gives them a long time.

The Tovaxin IIb doesn't exclude natalizumab in the exclusion criteria and I doubt the step III will because Tovaxin doesn't further suppress the immune system.

It's scary thinking that something you might do right now will reduce your future options, but those might not be options you'd want to consider anyway.

Bob

ewizabeth,
thank you so much for posting all that you are doing with your life. i am sharing all your postings and comments with my wife melissa who has been diagnosed since 9/07. she has been referred to start taking tysabri and we are trying to research as much as we can. she cannot move her legs at all and she has very little sensation in them. her arms are getting weaker, her speach is getting poorer. she has the spasms in her legs and she was having seizures but since she started taking dilantin they have gone away. she is bed ridden and she will not quit! she wants to walk again, she wants to run. we believe she will!! thank you for sharing your life stories and keep up the good work. we will be praying and believing ou this will work for your situation.
thanks,
rene

wife melissa diagnosed in 9/04

rene wrote:ewizabeth,
thank you so much for posting all that you are doing with your life. i am sharing all your postings and comments with my wife melissa who has been diagnosed since 9/07. she has been referred to start taking tysabri and we are trying to research as much as we can. she cannot move her legs at all and she has very little sensation in them. her arms are getting weaker, her speach is getting poorer. she has the spasms in her legs and she was having seizures but since she started taking dilantin they have gone away. she is bed ridden and she will not quit! she wants to walk again, she wants to run. we believe she will!! thank you for sharing your life stories and keep up the good work. we will be praying and believing ou this will work for your situation.
thanks,
rene

Hi Rene,

I hope your wife will have good results from Tysabri. Maybe it will be just the treatment she needs.

I have had times when MS has affected virtually all parts of my body/system. They usually get better, but leave behind just a little bit of a reminder each time. I have back, shoulder and arm spasms now that are keeping me from lifting anything more than about five pounds. That is driving me nuts. I do not like going from doctor to doctor or taking all these pills I take either. But we have to fight the good fight. And it sounds like you are helping your wife fight against MS.

Please check in here and let us know how your wife is doing, and thanks for being a supportive husband, that will help her more than anything....

Take care,

Ewizabeth

Rene, I think you have the best plan of action when you wrote, " we are trying to research as much as we can." Read, read, read!!! Start right here at this web site!

When you wrote of Melissa, "she will not quit! she wants to walk again, she wants to run. we believe she will!!" I agree with you. I think her attitude will get her far.

In the meantime, I think a good diet is an important place to start!! I encourage you to find and read the book, The Gold Coast Cure by Andrew Larson, M.D. and Ivy Larson. There are other diets, too. The food we eat is one area where we can take control, something we can do immediately without a doctor's prescription, and many people have reported improvement through diet.

Hi Everybody,

I had my first infusion last night, and it was blissfully uneventful. We got back late, about 9pm so I'm tired today and slightly headachy, but otherwise fine.

My next is scheduled for July 2nd.

Alright ewizabeth!

I know Tysabri is currently surrounded by paranoia so this will probably sound odd, but congratulations!

If your system will handle it and it slows or stops progression until something better comes along, that's exactly what you need at the moment.

Bob

Thanks Bob,

I even have a plan B in case I develop antibodies. That will be to go to half strength Rebif with more anti-depressants if necessary, just to keep me going until the next good thing such as an effective oral treatment comes along.

I hope your wife is continuing to do well.

Always good to have a plan B!!

My wife is doing very well on Tovaxin/placebo so far, thanks! She's been convinced from the beginning that she's on placebo even though the study neuro told her that her EDSS had dropped.

I'll have to read a little more about Tysabri because I didn't realize that developing antibodies was also an issue with Tysabri.

Bob

ewizabeth wrote:Thanks Bob,

I even have a plan B in case I develop antibodies. That will be to go to half strength Rebif with more anti-depressants if necessary, just to keep me going until the next good thing such as an effective oral treatment comes along.

I hope your wife is continuing to do well.

Ewizabeth
I was wondering how you were doing at this point after your Tysabri infusion? I hope you are doing well and the spasms are subsiding. I am starting to do a little research about other options as I have had a problem with double vision and vertigo that won't seem to go away, even with steroids. I am on my second round of prednisone for vertigo/vision issues this spring and I am wondering what my options are if this doesn't resolve. I am currently on Copaxone, which I did great on for 4 years, until recently. Prior to that, Betaseron, which elevated my liver enzyme levels and I had to stop. So if I have to change I want to start becoming educated on my options.

Thank you for letting us know about your experience. It helps soooo much!

Lori

other tradtional options are rebif, avonex, copaxone and novantrone i think

Hi Lori,

I'm doing ok but the spasms and pain are relentless. I'm thinking about calling the neuro for something to manage the pain, though I hate to take anything that might dull my thinking.

I didn't have any adverse effects from the infusion. I hope it will someday help alleviate some of my pain and fatigue, but I realize it isn't meant to be symptomatic relief.

Hi Ewizabeth,
Thank you for your reply. I hope you get some symptom relief soon! I appreciate your comments on Tysabri thus far. Please let us know how it goes. It is so very helpful.
Lori

Hi All,

I get my third Tysabri infusion on Monday. So far, so good. I was extremely skeptical (for at least a year), and I think I may have to eat some of my own past words in regard to Tysabri.

I can feel when it's nearly time for the next infusion. I get more fatigue, increased fogginess, etc... It started yesterday for me, four days before infusion number three. Last time it was a full week before my second infusion.

I can feel some improvements, and this is good. I still have disability in various forms, many of them not glaringly obvious unless you know me. But so far, I'm very happy with Tysabri and feel quite fortunate to be getting it.

After Monday's infusion, my neuro is going to have me tested for neutralizing antibodies. I don't think I have them, because I can feel it working.

I'll update sometime next week after my infusion.