Tysabri

[Tweeker]

Hi
The MS has taken a bad turn on me. No longer able to walk independently. If I want to move at all I use a walker. Left side of body becoming totally involved. It's really bothersome because for about 20 years only the left side was usable. MS doc told me last week that for sure the MS has àdvanced to secondary progressive. Doc said he was surprised that it moved faster than he'd typically seen it jump all at once. Hey - I eat vegetables; don't necessarily wanna become one.

So, though I'm not prone to worry, I am a bit reticent to follow his suggestion of dropping the Gylenia treatment and starting Tysabri. I just don't want a treatment to make me worse off than I am now. Not concerned that I could develop PML, if indeed it would croak me off. But don't want to be sorta liked S. Hawking. Any of this make sense to anyone?
Thanks
Tweeker

[agate]

Sorry that you've worsened. Sometimes these flareups are temporary. Function gradually returns but it may take time--months or even a year or so. Has physical therapy been recommended?

If you now have SPMS, there is no clear evidence that Tysabri will help, unfortunately, and the same is true for all of the disease-modifying drugs. Some people with SPMS go on them anyway (I tried two of them for 3 years each). Many neuros feel that if a drug helps those with RRMS, it just might help those with SPMS and probably won't hurt, and so why not chance it?

If you go ahead with the Tysabri, they've found out more about risk factors for PML and are being careful to monitor for them. If you don't test positive for the JC virus, for instance, you're at a much lower risk of PML while taking Tysabri.

Stephen Hawking has made quite a name for himself in physics in spite of his ALS. You probably won't become so severely disabled, but if you don't feel comfortable taking a drug that has some risks, maybe you should back off from the MS drugs for a while. You could always start one of them again later at any time.

[Jeanie Z]

:) Tweeker I became SPMS in 1992. In 2000 I started taking 4.5 mg capsule of LDN info at Only registered and activated users can see links., Click Here To Register... and I quit having new symptoms and I have had NO further progression in 15 years. Several MS friends who also went on LDN had symptom improvements. I did not have aany old symptoms improve, but I am happy to not be having any new ones. I was already using a scooter by the time I found LDN and I've had MS about 56 years.

Here is the site I learned about LDN on: Only registered and activated users can see links., Click Here To Register... It is a RX and I send my RX to Only registered and activated users can see links., Click Here To Register... and they ship over night. A month's suply is under $40. I get my primary doc to write the script for 90 capsules with one refill and that saves on the shipping charges. I plan to stay on LDN for the rest of my life. (I am 74.)

I took Betaseron for 5 years and Avonex for two years and continued to worsen and have new symptoms while on both. When I startted LDN I quit both of those. I do all I can to boost my immune system. I believe that our immune systems are not attacking our myelin, but that our immune systems are so compromized that they cannot protect our myelin. Jeanie :)

[SuzE-Q]

Novantrone is approved for SPMS, as well as some of the other MS treatments elsewhere in the world. I don't think Tysabri or Gilenya have shown to help. You might still be RRMS or relapsing progressive though if you have new weakness on the other side of your body, in which case, T or G may still help...it's not so easy to diagnose SPMS.

Only registered and activated users can see links., Click Here To Register...

As agate said, there's still possibility of improvement....physio or rehab might help.

[Tweeker]

Hi - Thanks Agate. The advise you give to people is Always great. One more time... Jeanie Z - Thanks for the info and thanks for the histories plus your gentle advice. As is the norm, caring people make this cherished universe of conversation really work.
Tweeker