I had IVIG treatments back in the late 90s when my disease 1st raised
its ugly head. I was to the point I was only sleeping 10 min or so at a
time due to pain and those 10 min were not very restful. It's amazing
what sleep deprivation will do.
The 1st IVIG treatment was pretty effective. I got about 5 hours of
great sleep for a change. 6 months later I got another IVIG treatment
and it was effective for a couple of months. We tried once more but I
didn't see change at all. we then went to narcotics and my neurologists
turned me over to a Anesthesiologist who tried similar methods before
putting a pump under the skin with Dilaudid (concentrated morphine) in
it dripping into my spine.
at some point in the early '00s, a med called Lyrica was developed which
made a huge positive difference. But I'm not so sure the original
diagnosis was 100% accurate.
I'd like to try weight loss and exercise but it's so hard to exercise
when my legs are a problem. My ortho surgeon suggested water exercise
which I hope to try soon. so we'll see.
mao said he forgot what caused the need for IVIG -- nerve damage. There
are variants but I was told mine is Chronic Inflammatory demylinating
polyneuropathy. (CIDP) . There's also Guilleme Berret (sp?) which can
also be quite bad. My only symptom is extreme pain while others have
pain and muscle loss causing some to become wheelchair bound. Others
have seen remission and have become almost 100% again.
Back to mao - my problem is the mylin covering on the nerve bundles is
being attacked by antibodies - when mylin is lost the signals to the
brain are confused. The nerve bundles look like millions of sausage
strings and the casing would be the mylin.
Wilt & I both have the same disease - when I was getting the IVIG I was
told it was a $10K prescription -- thankfully I have insurance that
covered it. Some people have IVIG treatments very often - like 2-3 per
week. Maybe that would have helped me? But since the 3rd single
treatment didn't help it wasn't suggested that I continue. Plus, for
me, it was such an unpleasant experience i was not in much of a hurry to
repeat treatments. I am convinced one of the injections caused a DVT
(blood clot in leg) even though the Neur. said that wasn't the cause.
I'm convinced the thick, cold fluid that was fed into my vein did not
breakdown enough before reaching my legs and caused the blood in my leg
to coagulate causing the clot. But that's my interpretation.
Before this (in ~1996) I never lost time from work due to illness. But
this makes up for it. ;-)
The fun just never ends...
LarryT
91 300D
On 11/71/2014 2:25 PM, Rich Thomas via Mercedes wrote:
was taking that stuff and still progressively declining. She changed
her diet and took up exercise and riding horses and stuff like that, and
has improved considerably. Apparently that is the experience of many.
FWIW, I have no idea how that might relate to your situation, but I
thought it was quite interesting.
--R
On 11/7/14 12:35 PM, WILTON via Mercedes wrote:
'Went for intravenous immunoglobulin (IVIG) treatment at 7; home by 10.
Wilton
----- Original Message ----- From: "Craig via Mercedes"
<mercedes@okiebenz.com>
To: "Mercedes Discussion List" <mercedes@okiebenz.com>
Sent: Friday, November 07, 2014 11:41 AM
Subject: Re: [MBZ] (no subject)
On Fri, 7 Nov 2014 10:15:28 -0500 WILTON via Mercedes
<mercedes@okiebenz.com> wrote:
Works
W
Yup.
So what are you up to today, Wilton?
Craig
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