Having problems with message search?
Hi Brad,
I can't remember if Dr. Karpati treated other dysferlinopathy patients with IVIg but I wouldn't be surprised if he had. He is among the world's leading experts in the diagnosis, treatment, and research of muscular dystrophy.
Unfortunately, I never had a chance to talk to him after the treatment, because I had already moved. I did mention my experience to several neurologists I saw after him but none of them really paid any attention.
Now that I've read this article, I'm going to see if I can get the IVIg treatment again. I'll keep you posted.
Amanda
baw1064 <bwilliams163@...> wrote:
baw1064 <bwilliams163@...> wrote:
Amanda,
That's very interesting, and thanks for telling about your
experience with IVIg.
Since right now we're trying to figure out if some type of trial is
warranted and the possible benefits/risks, any patient's experience
with IVIg is very valuable--whether the IVIg helped or it didn't.
Since there is very little information available, the results of
even one patient adds to knowledge.
Two questions:
-Do you know if Dr. Karpati has treated other dysferlinopathy
patients w/ IVIg? Did he give you any more details about why he
thought it was a good idea to try it?
-Did you ever talk to him afterwards, and mention your experience?
Thanks again for the info!
Brad
> Four years ago, when I was diagnosed with LGMD 2B, Dr. Karpati
from Montreal prescribed IVIG. I had two back to back treatments,
but then I moved and my new doctor didn't think it was a good idea
to continue. What's interesting is that althought I didn't see any
immediate results from the IVIG, two weeks later, I experienced a
huge gain in strength. It was so noticeable that I went up and down
a whole flight of stairs five times without holding on to the rails,
just to test myself. I was also able to get up from the couch with
little effort. At the time I thought the improved strength was the
result of an acupuncture treatment I had received for the first time
that same day. But my strength eventually returned to its weakened
state even though I continued with the acupuncture treatments. I've
always wondered what caused such a jump in strength. It lasted only
a week or so. Maybe it was the IVIG.
>
> I'm not sure this information is helpful to anybody, but I
thought I would share it just in case.
>
> Amanda
------------------------ Yahoo! Groups Sponsor --------------------~-->
You can search right from your browser? It's easy and it's free. See how.
http://us.click.yahoo.com/_7bhrC/NGxNAA/yQLSAA/Q2SolB/TM
--------------------------------------------------------------------~->
Yahoo! Groups Links
<*> To visit your group on the web, go to:
http://groups.yahoo.com/group/dysferlin/
<*> To unsubscribe from this group, send an email to:
dysferlin-unsubscribe@yahoogroups.com
<*> Your use of Yahoo! Groups is subject to:
http://docs.yahoo.com/info/terms/
Now you can have a huge leap forward in email: get the new Yahoo! Mail.
Offline 
Send Email