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Living with Polyneuropathy CIDP, GBS, & CMT

The Good News and the Not So Good News

Hello Folks, I had a follow-up with my
Neurologist last week and after 3 IVIG
infusions I’m happy to report that the pain
has decreased, a little. And the Dr reports
that muscle strength, reflexes and sense of
feeling have all improved. That’s
The good news. The bad news is that
I am now anemic. I was not prior
to IVIG and she suspects the IVIG
to be the cause. So, I’m off to
see a Hematologist. I’ve done some
research and autoimmune diseases
can cause anemia, as can the
treatment for same. Has anyone
else had a similar experience??
Thanks!! Bobby

I'm experiencing the opposite effect in that I've been diagnosed as having Polycythemia Vera. I visit the hematologist and have a pint of blood taken every three to four weeks. The IVIG has been remarkable as in rebuilding muscle strength coordination, balance, and general well being. I'm on a monthly treatment plan for 6 months (I've just completed the third dose) and I experience higher levels of recovery after every treatment.

I’m anemic too. The hematologist thinks doing plasmapheresis may have led to this, along with not getting enough iron in my diet. I’ve been on liquid iron (Novaferrin 125) for about 5-6 weeks now, and will be having a colonoscopy and endoscopy to be sure I’m not losing blood internally. Fun, fun!

I am also anemic and do follow visits with a hematologist. I have antimag and monoclonal paraproteinamia with the cidp. They are following my blood work to see if I am heading towards lymphoma. I think I may get anemic from nausea associated with the pain meds they prescribed. Please keep us posted on your progress. Peace Nancy

Thank you. I saw the Hematologist on
Friday. They drew what must have
been 20 vials of blood and tossed
in a urine sample for good measure.
Have a follow-up in a couple if
weeks.

I was diagnosed with Polycythemia vera about the same time as CIDP. I was being phlebotomized to maintain a Hgb level of about 14,0 -14.5. These phlebotomies were two weeks apart to star with and then went to four and then 6weeks. Last year I was able to go for 4 months without a phlebotomy and than last fall my blood surged to the 16.0 -16.5 level and I am back on a four week regimen.