November 17, 2011 at 8:57 pm

[FONT=”Microsoft Sans Serif”]my hair came back 😉 [/FONT]


February 15, 2011 at 9:03 pm

I think you kind of answered my question; 105 #s Grip Strength might BE “great” though I’m sure healthy it was more like 200#s. My distress is I’m losing my legs and the musculsature supporting muy back. I have a long history of sports and traumatic injuries, though- the CIDP might be the Camel’s Proverbial Straw, and, comparatively speaking- I AM doing

NOW- for your Questions;

Mucophenolate 2000 mg per day, 2 years now, GOT ME OFF THE STEROIDS, Yeah! ( Prendisone was killing me)

Johns Hopkins- GREAT PLACE, Dr Cornblath, very knowledgible, Published, on
CIDP- but I’m certain their Neuromuscular Group, in general can
Handle you, as well, if not better than a Local Guy.
They get you in/out while still apearing to care- the
Parking is closeby and reasonable.

I’ve corresponded w MANY who have had good results with beta interferon, Insurancew may not cover, and risks are similar to Cell Cept

Radiation- No experience

Cell Cept can cause Kidney Issues, makes one super susceptible to infection, can cause Lymphoma/Myeloma, blah blah- but side effects are often less than chemo drugs like Cytoxan, Ratuxant (Sp) etc

AND PICKING ONE OF THE TOP DOCS for CIDP might have drawbacks that a
“New Kid” doc might not? (I often wonder if more agresive treatments would serve better, I’m honestly not sure. . .)

I’m thankful I went to Hopkins, thankful Dr Cornblath took me in and Tried Cepp Cept on me . . . If it has not saved me, it has bought me a couple years

Hope This Helps


October 2, 2009 at 2:34 pm

has the nurse come back to try to make it work?
hope so,