Saturday, August 16, 2008


I got a letter from my doctor last week saying 2 more people have been diagnosed with PML as a result of taking Tysabri. This was a huge blow. I spoke to my doctor on Tuesday the day of my third Tysabri infusion. He told me he wanted me to take it for another 3 months and then make a decision. I really don't have any other options. Avonex wasn't working so he doesn't feel going back to the drug will be that beneficial. He told me 3 lesions developed while I was on Avonex, one lesion developed on my brain stem a very bad spot to have a lesion. I also had 3 relapses while taking the drug. I am not sure what I am going to do. I really don't have any options until more drugs are FDA approved. Going off all medicines is not an option either. I want to be able to walk in a year. My doctor says I have a very aggressive case of MS and I need to stay on medicine if I plan to walk in 2 years. Well this is depressing so I will write later.

1 comment:

Wondering said...

Jen, don't give up or give in. Check out this diet.... from the MS recovery diet....
I was just diagnosed with MS 5 months ago and I have been researching alternative treatments.
I am currently on Beta Seron and
I thought about Copaxone. Even though I am on a drug, I continue to search for natural treatments. I am using magnets for the nerve burning in my hip and I am using the magnets in my shoes. I am going to a chiropractor. They work with nerves etc.

The two women who wrote this book had the same issues you speak of and since the diet they have been walking and hiking etc. It is a 50 some year old theory about how your body can be alergic to some foods. You clean your body from sugars, wheat, eggs, milk, caffeine, red meat, yeast, dairy, etc. Then you gradually introduce these foods back to your system and see if you have a reaction to them.

It is a "TOUGH" diet. Not only do you have to stop eating your favorite foods, but you have to shop and find foods that don't have this stuff in it. Once my wife and I started shopping for these foods, it got easier but I kid you not, I went crazy on this diet. I ate so many almonds and pistochios (you can have those).
There are blue corn chips with salsa. There are some sugar free fruit pies etc, no wheat though so the crusts are different. All the fruit you can eat.

The book is only around $10.00
I lost 20 pounds in 3 weeks. I wasn't trying to loose weight but the foods you eat are so healthy that your body seems to shed the bad stuff.

Anyway, from your last post it seems you need something new to pin your hopes on. Do get this book and at least read it. I think you will find the authors were in the same or similar condition that you may be in.

Obviously I can't guarantee it will work for you but what if it does.

I'll be praying for you.