Hi Tobe,
Nice to see you.
Some of the doctors think some other inflammatory process is causing my
hand problems, which
started about 15 years after the onset of TM. So I don't know.
Re: the cost, wow! Sorry it didn't help you.:(
Take care,
Kevin
T Kanon wrote:
Kevin, I had the IVIG treatment years after my TM episode. It did
nothing for me but did cost GHI about one hundred thousand dollars. A
nurse came to my house once a month for six months and sat there while
the IV dripped into my veins. I was concerned because it is a blood
product. Good luck. Stay well.
Tobe
Brooklyn NY :O)
--- On *Sun, 1/11/09, Kevin Wolfthal /<wolft...@optonline.net>/* wrote:
From: Kevin Wolfthal <wolft...@optonline.net>
Subject: [TMIC] IVIG
To: "marieke dufresne" <marieke...@hotmail.com>, tmic-list@eskimo.com
Date: Sunday, January 11, 2009, 5:57 PM
Does IVIG reduce inflammation? I think a doctor wants to try it on me, but
they
want me to have a nerve biopsy first and I don't want to because I've
read that
a nerve biopsy can cause permanent numbness in the biopsy site, and I don't
want or need any more numbness. However, I may get desperate enough
to do this because I don't want to live this way if there's a chance of
improvement.
Kevin
marieke dufresne wrote:
> RE: IVIG, I had it after the first 3 weeks of TM. I had it every day for 5
days. There is no reason to have it more often UNLESS you have a recurring
autoimmune disorder, ie: if your TM is recurring. No point if you had ONE
attack
many years ago, it would not change anything now.
> I got some movement back following the IVIG, but no one knows if it was
due to that or the steroids or....
> Marieke RN
> TM @T1 since March 2004
>
> ------------------------------------------------------------------------
> Date: Sun, 11 Jan 2009 14:28:43 -0800
> From: tmic-digest-requ...@eskimo.com
> Subject: tmic-digest Digest V2009 #20
> To: tmic-dig...@eskimo.com
>
>
>
> --Forwarded Message Attachment--
>
> tmic-digest Digest Volume 2009 : Issue 20
> Today's Topics:
> [TMIC] Washington Post article/Intra [ "Trudy Ogilvie"
<mother...@gmail.co ]
> RE: [TMIC] Washington Post article/I [ "Gerry Surette"
<suret...@sympatico ]
>
>
> --Forwarded Message Attachment--
> Date: Sun, 11 Jan 2009 13:16:24 -0500
> From: mother...@gmail.com
> To: snow121...@hotmail.com
> CC: tmic-list@eskimo.com
> Subject: [TMIC] Washington Post article/Intravenous immune globulin
>
> Did anyone get a chance to read the Washington Post article I sent out. A
young teenager was given intravenous immune globulin." at Children's
hospital after he was diagnosed with Transverse Myelitis, when the steroids
didn't work. Two weeks later he walked out and has made the basketball team
at his college. I asked my neuro about this and she said that it was too
late
for me, but if I insisted she would help me work with Medicare (they really
give
you a hard time!) to give it a try. Tho she said I would have to have these
infusions every 8 weeks or so for the rest of my life? She did say that she
doubted very much that it would help at all.....
> Has anyone here ever had these infusions...??
>
> Carol I was wondering if you could talk to your neuro? Just a thought!
>
> Also I use the same quote as you but it's only on my Hotmail account..
It was nice to see it again!
> Trudy
>
>
>
>
> --Forwarded Message Attachment--
> Date: Sun, 11 Jan 2009 15:47:55 -0500
> From: suret...@sympatico.ca
> To: mother...@gmail.com
> CC: tmic-list@eskimo.com
> Subject: RE: [TMIC] Washington Post article/Intravenous immune globulin
>
> yes I have had that treatment twice; having had ItP this procedure helped
raise my white blood cell count. It didn't help me otherwise; the treament
last 4 to 5 hours intravenously from 3 to 5 days at a strech. If you go to
the
hospital to have the trreatments my hemotologist recemmended I have someone
with
me on my way home. Scince the "bag" is keept cold prior to use they
usually cover you up with a blanket. otherwise I had no side effects. the
nurse
who gave me the treatment was gorgeous so the day went by fast
> >From: "Trudy Ogilvie" <mother...@gmail.com>
> >To: "C E" <snow121...@hotmail.com>
> >CC: tmic-list@eskimo.com
> >Subject: [TMIC] Washington Post article/Intravenous immune globulin
> >Date: Sun, 11 Jan 2009 13:16:24 -0500
> >
> >Did anyone get a chance to read the Washington Post article I sent
out. A
> >young teenager was given intravenous immune globulin." at
Children's
> >hospital after he was diagnosed with Transverse Myelitis, when the
steroids
> >didn't work. Two weeks later he walked out and has made the
basketball team
> >at his college. I asked my neuro about this and she said that it was
too
> >late for me, but if I insisted she would help me work with Medicare
(they
> >really give you a hard time!) to give it a try. Tho she said I would
have >to
> >have these infusions every 8 weeks or so for the rest of my life? She
did
> >say that she doubted very much that it would help at all..... Has
anyone
> >here ever had these infusions...??
> >
> >Carol I was wondering if you could talk to your neuro? Just a
thought!
> >
> >Also I use the same quote as you but it's only on my Hotmail
account.. It
> >was nice to see it again!
> >Trudy
>
> ------------------------------------------------------------------------
