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I'm breaking down

PostPosted: September 27th, 2014, 2:27 am
by misterjuanperalta
I stretch my back and it twitches. My tongue has a persistent twitch at the front left side. I speak and it sounds breathed. I am on Flonase for postnasal drip per my ENT. The twitching even affects my chest and neck area. The list keeps getting complicated. See my symptoms update below. To make matters worse, I'm forced to wait 7 months to see an expert. I don't want to live this way anymore.

Updated symptoms list: viewtopic.php?f=5&t=20814&p=156544#p156544

Please advise.

Re: I'm breaking down

PostPosted: September 27th, 2014, 3:58 am
by Yuliasir
well, if you do not want to live this way anymore, you still may choose another one way of life. For me it looks like the only help we can provide is to support your possible decision to consider ALS fears as the main problem, not the twitching. Working in that way would definitely make you feel better and in 7 months you may not need an expert visit at all.

I am not very much familiar with american healthcare system, but for me it looks like being put in incredible 7 month waiting list means that your case is definitely not urgent (otherwise waiting list would be much shorter)

your symptom list really points to metabolic disorder (possibly diabetes), maybe B group vitamines deficiency (paersthesias, muscular pains), GERD (postnasal drip, throat tightness) etc. This is typical for BFS in general.

Re: I'm breaking down

PostPosted: September 29th, 2014, 8:20 pm
by terry in sf
misterjuanperalta wrote:I don't want to live this way anymore.


Dude.... you're fine. You've had tests. You've had multiples of tests. You aren't waiting 7 months. You've done everything you can to make sure this isn't something terrible. Now your task is to get a handle on the fear. I know it's hard; I'm here too.

Something we have to accept is there are no guarantees. How do you know you won't have a stroke five minutes from now? You won't choke on your dinner tonight? Or have a heart attack or get hit by a bus tomorrow? You don't know. You *can't* know. But it's impossible to live in constant terror of what could conceivably happen. You take appropriate precautions in life where they can be taken, but there are many things you can do nothing about. Somehow each of us have to find the courage (and stuff down the fear) to get out of bed every morning, living as we do with no guarantees of safety. People say "denial" is a bad thing, when it is actually what we all do, all the time, in order to get through every next minute.

And somehow come to terms with the finite nature of life. Best case scenario, this is a short trip every one of us is on. Make the best of it you possibly can!