hi scarlett and welcome to you. i'm so glad you're here! you're sx sound eerily familiar to me also and i have a rather severe case of true neurogenic TOS, bilateral and with some vascular sx thrown in just to keep me on my toes (oh yes, and sx IN in those tosies and footsies too, now that you mention it...
).
hard sometimes to resist the temptation to just lump everything in and attribute it to dread TOS, i'm afraid, though. happens to be one of those dx which can and will mimic a whole host of other syndromes and distinct disorders. very difficult to dx and we may be a lot of things, but last time i checked, nope! no M.D.'s after our names. so the best thing would be to find a top TOS specialist to rule it out or in and proceed from there. i hope that you do not have it, personally, and that it just looks and sounds so familiar to Jo and me because we live with it day in and day out that we, quite naturally, "go there" so to speak, almost by rote. but my instincts tell me otherwise, unfortunately, scarlett. i do think this bears some serious looking into in your case, and i hope your docs will give it the attention it deserves. you've come to the right place to begin to find out one way or the other, at any rate, and if nothing else, will meet some great people in the process over at the TOS forum and elsewhere in your neurotalk travels and for that i am happy indeed.
what part of the country are you in? many of us (myself included) burned through multiple diagnoses, over several years' time and as many physicians and countless tests before finally finding the one which gave us that aha! moment (or in my case, the oh, sh_t! moment, scarlett
), or as i like to call it the "TOS y.e.s." - it can explain so much, believe me, that made absolutely no sense prior! but not without it's own set of gloom and doom from a prognosis standpoint and no stranger to controversy as perhaps you already know...so hang onto your seat my newfound friend, it may be a bit of a bumpy ride
...
so many of us on the TOS forum carry dual or multiple diagnoses (a competitive lot, you say? don't even start with us! we are a bunch of overachieving perfectionistic type 'A' goal-oriented workaholic lovable nutjobs, scarlett!). so welcome, and welcome home. lots of one-armed hugs await you. feeble but heart-felt ones. if you say your pain is 9 on a scale of 1-10, then mine is at least an 85! and if you have TOS, RSD, MS then i have TOS, CRPS, FMS, CMPS, and my dog just died. you see how it works? that's how you get in the club, scarlett. i hope i'm making myself perfectly clear, here.
kidding! i am so totally kidding, girl! please do not ever take anything i say seriously if you're at all unsure i probably have my tongue firmly implanted in my cheek!
i mean no harm or offense to anyone, just am a sick ticket if you will. i really want to welcome you with open arms (both of them wide open!) to the TOS forum and our little family over there.
and you know what, even if it turns out technically not to be the correct medical dx for you, i do believe some of the tx and modalities would totally be beneficial for you, scarlett. because so many of your sx sound exactly like what we deal with on a daily basis, physically, mentally, emotionally, spiritually and every day and every way.
so welcome. breathe. relax, kick off those shoezzz.
alison
i'm going to PM you my phone # in case you want to use it (let's see how crazy you really are, OK.)
ciao for now.
alison