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