IDIOTPATHIC?
Truly to me, the phrase 'ideopathic' didn't strike fear into my being as much as it does now. IP means either truly the docs don't have a clue, or more likely they are too lazy to look beyond their noses.
About gentetic testing tho, I agree with the concerns of both of you, C and Glenn in that such testing can be and will be a medical, ethical and fincancial two-edged sword. I am wrestleing with the whole 'concept' delemma myself. The delemma is that IF it is determined that I do have genetic components to my own CIDP, I could ultimately be eligible for my IVIG thru both medicare and my supplemental plans. To qualify for the IG under medicare, it's got to be 'inherited'. I am working up the courage to be an advocate about the issue in this area, as best I can travel tho. This is a purely selfish goal tho.
More basically, and I know, Cycleops-that your circumstances are far more complicated than mine tho. IS what is so wrong with the 'MEDICAL BUSINESS" that they just have not curiousity to seek out answers? Those that HELP their patients?
So many medical professionals are soo slaggard in their approach to diagnostics if they really diagnose at all.
It scares me because we are all of the same age [kind of] and all fairly well educated and fully functional active people BEFORE this PN in all it's varieties and 'blessings'. It scares me because there are probably a dozen others for each of us who have not found this resource and are neglected, in actuallity, by their physicians. It scares me that environments we work/live or have worked/lived in could be defiinitive connections to our issues, yet no one has interest in that aspect.
I agree with you Cycleops about the genetic/family aspect. It's not an issue for me, but for my siblings and their many children and grandchildren I do have great fear to find out about genetic issues....for them.
Geesh! It's scary enough to be scared with a progressive neuropathy of any kind! To think that it's 'shared' in the genes is both amazing and spooky at the same time. I can only hope deeply that those in the genetic research fields have the ethics to control how such information is used. It's unlikely, but possible? Thing is the tools that can cure can also do the opposite. Genetics is one of those tools. History is testament to that. And will be again.
Every single day I wake up and am able to get up, I count my blessings, as most of you all do in that I CAN get up! [I Believe BobB had a quote to that effect, it's stuck in my mind and helps keep me going! Thanks Bob for that quote]
Dealing in the here and now tho...treatment of symptoms is the norm. The only norm! We have to deal the cards we are dealt, and play them the best we can to get better treatments than are currently available. Prudent review of any medications, treatments and therapies are now our only defences against quackery, indifference or malparactice.
I sure wish it were different? Hugs to all! - j