Re: [TMIC] Subject: [TMIC] TM newly diagnosed

Sandra Melville (luthyen(AT)erols.com)
Tue, 06 Jul 1999 19:08:16 -0400

Hi Bobby Jim,
The cytoxan is to turn off the immune system (ie the crazed autoimmune
response) and hopefully allow it to reset itself; used with those of us who
have a "smoldering" or ongoing inflammation. The IVImmunoGobin for some reason
works by giving us a "library" of other peoples' immunities (if our own
were one book). Now why that helps with the inflammation, who knows; but for
some of us it does. Not for all; and it's scarce and very expensive; and again
used for those with ongoing inflammation who respond to it. That's it in a
nutshell--

Sam in Boston where in the words of the wicked witch "Im MELTING!!"

Robert and Marabeth wrote:

> My wife's first episode also started with numbness below the waist, first
> the feet, then one leg then the other. That was in September '97, and her
> numbness continues, and we doubt it'll go away, unless her myelin at T-8 is
> somehow miraculously restored. My wife had to re-learn to walk
> without a waddle because of the numbness, which also caused to lose her
> balance now and then. She felt like she was walking on pillows.
>
> As for the double vision........hmmmmmmmmm. It sounds like there is-was
> damage elsewhere. Has the double vision returned.....????
>
> The sideeffects you mention your BMT patients experiencing, I know of no
> one who's been that bad off. I can't believe it's the interefon alone.
> They must be on a combo cocktail of some sort. You should check the Avonex
> web page at avonex.com for more details on side effects. All I know is
> once you start on interferon, all you will feel are some flu-like symptoms
> on the day of the injection, nothing else, and those can be mitigated by
> taking ibuprofen every four hours the day before, during, and after the
> injection. I know of several people on Avonex besides my wife, and no one
> has experienced anything worse than the flu symptoms I've just mentioned.
>
> As for giving Cytoxan and Gamimmune to TM-Msrs, that's a new one on me as
> well. (maybe it's time I do some more web research.......or ask
> Alton......?????)......
>
> Bobby Jim in Memphis, where I've yet to see Elvis. We must keep different
> schedules.