Re: Tysabri treatments

Chuck, I certainly wish the best for both of you.

I spoke to my neuro this past Monday about various treatment options.
Dr Stuve is a well thought of associate and researcher at the UT
Southwestern Medical Center in Dallas and used an advanced postdoctoral
grant from the National Multiple Sclerosis Society (NMSS) to gain his
first insights into MS. Seems to me he has used his Phd well.

He heads up the MS clinic at the VA hospital on Mondays and in the past
has been closely involved in the study of high-dose immunosuppression
and autologous transplantation for MS (HALT MS) as well as the cancer
drug Rituxan B cell treatment for PPMS.

We talked for quite some time about the Tysabri or Rituxan options. His
opinion, which I trust, was that my secondary progressive is advancing
at such a well documented rate that I'm past any hope Tysabri might
offer. The Rituxan is on the back burner until ?. He does recommend
that I continue the Copaxone to smooth out the ups and downs.

So...it's keep on keepin' on with the nearly max doses of meds for the
TN, generalized neuropathic pain and muscle spasms.

His ideas on marijuana were evasive to say the least but I suspect that
is because of the VA's stand from the federal side of the equation and
maybe not his own. He did hint that there is evidence of useful
chemicals in smoking or digesting as opposed to manufactured sprays or
oral treatments. His only advice...don't get caught buying any.

I saw my first, bright, earth to earth rainbow in years on my way home.

Life is good.

Tick
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Tysabri treatments

Group: alt.support.mult-sclerosis Date: Thu, Jun 14, 2007, 9:42am
(CDT+1) From: chsw@xxxxxxxxxxxxx (chsw)
Bride of Chuck receives her third infusion of Tysabri today. I think
that it is too early to evaluate whether this drug is effective for her
after three doses. I do not see any reversal.
    I still see some decline. Cara has to take it with Benadryl
and other drugs to stop an allergic reaction. She had to do that when
she received IVIG as well.
I'll keep everyone posted on her progress.
chsw

*****Don't Cry Because It's Over, Smile Because It Happened*****

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