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----- Original Message -----
From: Grace
To: TMIC
Sent: Saturday, March 18, 2006 11:36 AM
Subject: Re: Spinal Cord/Depression/Panic attacks. .
Actually I have Devic's disease, of which TM is one
of the biggest symptoms. Mine is the relapsing type and so my prognosis is
not good. The neuro has already adressed end of life issues with
me---things like do I want a ventilator, DNR, etc. In Devic's,
unusually large areas of cord are effected. Almost always three but
usually more. I relapsed very early, only 8 weeks after the initial
attack. In hospital four times since April of 2005. Started going
blind in January of this year, but luckily they were able to arrest it with IV
Solumedrol. If that hadn't worked, they were going to do plasmapharesis
yet again. Right now they are considering outpatient chemo as a long term
care plan. Chemo helps to suppress the immune system. I was on
azathioprine but whenever they titred me up to 200mgs per day, I became
violently ill and so they now have me on another drug called Cell Cept. So
far, so good. I go back in May for another blood test which will be sent
directly to the Mayo for the NMO autoimmune antibody test. As of January,
I was still positive---not that a negative result means I am out of the woods,
just that the titre is low enough not to be detected.
Jeff, I get so damned depressed. I've still got a
young daughter, just fifteen, and I want to hang on long enough to raise
her.
Often, whenever I read a post at the Devic's board from a
brand new sufferer, I'm dumbfounded at their naievete. You'll see posts
from young women who are considering a pregnancy (With relapsing Devic's?
WHERE are their heads????) Posts from people looking for a cure---there is
none. People who are confidnent that they have been cured---and generally,
just innocent naive people who have no idea of the hell that's coming down the
pike. It makes me so sad, and sometimes I even cry.
:-(
Thank you so much for your very kind post. I
desperately need someone cheering me on from the corner.
Grace
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