This is soo discouraging!

April 2, 2008 at 8:06 pm

IF ALL CIDP folks had ‘classic’ presentations we wouldn’t necessarily be here, right?
I actually had one [large area] hospital neuro department head tell me I could NOT have CIDP because I was NOT in a wheelchair. I replied to him that: I was treated just in time to KEEP from being in a wheelchair. Excuse me? Of course, this was another neuro at another hospital ‘across town’ and the doctor ‘egos’ to prove each other wrong was definitely in play.
While it seems an impossible task and somewhat unnecessary option? Go to a bigger hospital with a known history of abilities to diagnose CIDP and then plunk it on your home town neuro’s desk. That way, he’s kind of off the hook about the IVIG, which it sounds like you need. Truly one thing in the whole diagnostic and treatment regimens indicates that IF there is an IVIG positive response…it’s a duck? Plus a lot of tests to back it up, of course.
For me, it only took three trips to the ‘big city’ for my diagnosis. Nearly all of the testing was done near home. That kind of thing can be worked out easily.
As others have said, second, third and multiple opinions are cheap compared to your life. They are WORTH it! I am still kicking myself that I did not change neuros right away, the first one was a total dud and was not on the ball at all. The damages done and likely permanent are inestimable. The last four out of five years have been ‘catch up’.
Some neuros are very reluctant to use IVIG. I think it goes back to their training somehow…That ‘opinion’ by an ‘expert’ higher up the reputation food chain should help get and keep the IVIG pipeline going. Do not delay in trying to get an appointment ASAP someplace super! They can take months to get and you don’t want to experience any more set-backs than you have.
As for feeling ‘OLD’? Yes! This stuff does age you! I ‘used’ to look 10+ years younger than I was until CIDP. Now I think I probably look 10 years older. Bad enough the ‘walk’ and all, but to be treated as one FAR more senior than I am is truly an ego blaster.
So, tomorrow go and call for a real opinion and go and get the right and best treatment you can! And, keep everyone up to date on it! It sometimes takes a lot of work to get that diagnosis and treament, but it IS worth it.