Thread: End of the road
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Old 12-18-2012, 09:39 PM
bny806 bny806 is offline
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Join Date: Nov 2011
Posts: 576
10 yr Member
bny806 bny806 is offline
Member
 
Join Date: Nov 2011
Posts: 576
10 yr Member
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gosh, that just sounds AWFUL.. I am so sorry you are having to go through, not only feeling awful, but having to experience such insensitivity and them telling you it's in your head...
I got a lot of that "aww your a new mom of 2 young kids, working a full time job".. that can cause a lot of anxiety. ... etc etc... My response was "I hope that this is all in my mind.. as honestly, that would be the best case scenario right? ?? Just put me on some pills, get me some therapy and call it a day".. (I know it's not always that simple of course, however... ).. they didn't know what to say in response to that ,,,,,,

they have likely never walked in similar shoes.. therefore can't understand not only the mind games that we play on ourselves, especially without a firm diagnosis.... or just the stress that every single motion, every single minute of not feeling "normal" anymore can do to you .. physically and mentally.. OF COURSE when you have a physical ailment that interferes with every aspect of your life your gonna be anxious.. i'd worry about anyone who wasn't!! And of course there will also be an aspect of depression... HOWEVER... it's so important for your provider to understand which came first - chicken or the egg... I had a neuro tell me, yes I'm weak, but she thought anxiety was a big part.. however my PFT''s were pretty darn low, and they admitted me into the hospital (exactly one year ago).. I got IVIG and am now a new person, though still not "normal".. I still thinks he thinks anxiety is a big part of it.. but of course i'm anxious.. but it is not the cause of my symptoms!!!

I would say seek a dr that will take you seriously.. though it sounds like with them planning an admit for treatment, they are at least taking you a little seroius?? I feel like my dr's have gotten to the point where we are no longer really testing (besides follow up/repeat tests).. and just say "uh, it's some autoimmune thing with your nerves and muscles, we will likely never know".. I would love to find a concrete- treatable answer, but i'll gladly take just the treatable part too!

Keep us updated, oh I meant to say - have you researched neuromyotonia, or myotonia? the jerking/spasms sound like myotonic "attacks" or something.. if you tap your thumb pad does your thumb go all wacky?? (mine did before IVIG).. that is myotonia from what I know..
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"Thanks for this!" says:
wild_cat (12-19-2012)