Does it count to be taking a cancer hormone depressant?
I’m on one and I hate it because all the s/e’s of this med make some s/e’s of CIDP worse. One more year to go! Whew!
Taking it a step further? Who’s to say that hormone suppressants don’t contribute to it all as well?
Thing is, HOW info on CIDP patients are actually diagnosed w/cidp has been hap-hazard at best. Questions in the ‘polls’ done are only as good as the knowledge of ‘the questioners’. Maybe they aren’t asking the RIGHT questions about prior to onset, then about onset? Diagnosis…we all know about THAT! The good, bad and the ugly.
Every single med to help CIDP has a consequence. Thing is to try and error and see which meds work for YOU. We all seem to be soo different in our reactions or effectiveness of meds? It’s sort of a 52-pick up kind of affair, for each of us. You’d ‘think’ things could be more orderly by now? It’s not getting down to the rankandfile docs who treat us tho.
Somehow the connection between folks like us and the whole medical community is NOT a connection at all. Are we to be cited for shortfalls, or should the docs be cited? The docs have access to statistical data about US that we don’t have. So….Docs -get on the ball and communicate! Please.