This is a "New Thread" but I’m new to "Forums" PML-Help?

July 24, 2008 at 1:56 pm

[SIZE=5] I’m Dx’d CIDP a year now, Prendisone worked for a time it reducing symptoms but has lost it’s charm. 10 doses of IVIG infusion had a slight negative effect. [/SIZE]
[SIZE=5] Now, Johns Hopkins Specialict (on the Foundation’s Board) is recommending Cellcept- but my local Neuro is saying he doesn’t “prefer it” and is warning me about “PML”. [/SIZE]
[SIZE=5] I tried for hours, yesterday to get the # of non-aids related PML Deaths. CDC, NIH, NORD, none could give me #’s to evaluate the risk.[/SIZE]
[SIZE=5] Thing is, though I’m now Disabled, I can almost function for an hour or two (no consistantly) In fact, the Drs say I’m “not so bad” or “strength is good”. From my viewpoint, I’ve given up my business, will be downsizing my home, can barely carry my 7 yr old daughter, am getting worse AND I”M A FORMER FULLBACK![/SIZE]
[SIZE=5] Just everyone’s opinion; am I crazy for pursuing treatment so aggressively when “I’m not that bad?” Does anyone know how many non-aids related deaths are attributed to PML? (So I can guage my risks?)[/SIZE]
[SIZE=5] Meanwhile, I apologize for being SO dramatic- I realize many of you may NOT ne “good” for an hour or two, at all. But I’m deteriating, here and just vtrying to reverse the trend?[/SIZE]
[SIZE=5]Peace and Hope to all;-)[/SIZE]