at IT while IT progessed? I found here and other sources! Here most kind and valuable!
Honestly? Most docs can and DO change their minds day to day about each of us? I know for a fact that my own docs revise diagnosis according to whatever is being slammed their way that day and how well I'm doing on 'maintanance'! So far? I've counted at least 8 on my neuros' exit sheets!
Hermes? My 'first' and fired neuro kept upping Neurontin to the point where I was having hallucinations! I pointed this out to him? HE THOUGHT I Was CRAZY!.. I CHANGED NEUROS and got back some life!
Thing is? That some docs come into diagnostics with a heap of biases! And often little experiences regarding some auto-immune and hereditary neuropathies.
Also know? That neuropathies,...depending on what their triggers are? Are totallly squirrelley as to how they act/react to many therapies. There can be times when some 'treatments' feel super? And later make you want to crawl out of your skin! As an instance? Mrs D's soaking feet in epsom salts? After five minutes I thought I'd be hanging from the ceiling like a cartoon Garfield! I went up the wall and back down again? But, other of her suggestions about supplements make sense and are practical to take if the overall scheme of things. Heed HER WORDS WELL! She KNOWS PN PAIN and still shares with all of us! Freely and kindly!
Dr Smith? As one who has gone thru multiple immune system 'breakdowns' [For want of better word?]. Things can and do cascade. Not for the better tho unless something is caught early on! In my case? It WAS cancer, and my IVIG treatments for CIDP did help contain that cancer. Cited here:
http://www.ncbi.nlm.nih.gov/pubmed/16391406 It was a very small sample? But on target as I'd been on IVIG for a year before the cancer was detected. AND I'd not been tested for cancers before even tho I'd a strong family history of it. SO BEWARE?
As for your headaches etc? Have scans been done of the head and neck? W/wo contrasts? Etc? This could be KEY in either including or excluding many other neuro or immune issues.
That all said? Remember. We are NOT HOTHOUSE FLOWERS growing in a contained environment. We go out and about into the world when we mite be most vulnerable and not even know it! Doesn't mean we go out w/face masks on. Just at less crowded times of day for 'contact' with possible 'flu' or other sick people. Worst is having to to to an ER!? THERE ARE REALLY SICK FOLKS THERE? AND I truly don't want to 'share' if I can help it!
Hey! We will get thru it! We are smarter and more alert than most, and we know to learn and ask questions before we get killed with benign ignorance!
Go forth and fight! What have you got to lose at this point, besides some co-pays and a lot of effort! The pay-offs could be immense! Hope and faith in yourself now and in the future! 's - j