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Questions From A Newbie Aka - The Undiagnosed


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#1 - Does anyone notice that, if you do drink alchohol, that you can actually feel it going into your blood stream? I can feel it burning as it goes in. Then, there are times when I can drink and drink and drink and not feel intoxicated at all and then there are other times when I can have half a drink and be too drunk to walk straight.

#2 - Do y'all get all flushed just from feeling embarassed or nervous, ie. like an interview or when a cute guy (or girl) comes around? When drinking alcohol? Eating certain foods?

#3 - Sometimes, I have trouble.........ummmmmm, gulp, having an orgasm. My sex drive seems to come and go for no real reason at all. Anyone else feel like sex is a chore, especially if you can't finish nicely??? (Sorry I couldn't think of any other way to put it!)

#4 - I seem crazy sensitive to meds. Even things like Tylenol.

#5 - Anyone else have trouble swallowing and speaking? You can hear my heartbeat when I talk, "IN" my voice. It's kinda spooky, I must say. I haven't been able to swallow solid food for over a year now.

#6 - Temporary paralysis?

#7 - I get this weird thing when I'm falling asleep (and it seems to be seeping into some awake time now, too) where I feel like I'm getting really tiny, but, my arms and legs and face are getting huge. Like, me, my essence of being, is shrinking and/or my actual body is getting huge. It becomes so disorienting that I can't fall asleep and I have to keep moving to feel the covers and my bed to make sure that I'm not swelling to gigantic size.

I'm sorry I know that all of this sounds crazy, but I've asked all of these questions on my MG site and got some reassurance, but not a ton............am I completely insane?

Rebecca

PS - Plus I've been smelling rotten meat, burning electrical wires, poop, vomit and amonia for years now, but that's already been addressed. :rolleyes:

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nope you dont sound crazy to me... i think you need to find an ans specialist.. and get properly evaluated by somebody who is familiar with dysautonomia...i know that that is alot easier said then done..

are you able by chance to travel to see somebody or apply to mayo or vanderbilt?

good luck to you I hope that you are able to find a dcotor to treat and properly dx you soon!..

oh yeah folks with dysautonomia are generally intolerant of alcohol.. and it makes them symptomatic.. if you find that alcohol bother you.. stay away from it..

i can totally relate to the 6 and 7 on paralysis. ... have you had a sleep study done by chance??

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I don't think you are crazy. We all share some simliar symptoms and then some not. I get the warm feeling from wine and then it makes me feel very heavy, but then it passes.

I can feel my heartbeat sometimes most anywhere!

I do'nt feel like I am getting tiny, but I do feel sometimes like body parts are swelling, usually one of my feet will start or one hand.

Hope you can find someone to help you soon.

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Hi Rebecca,

Your not crazy...in fact if you are then so am I :rolleyes:

I too have not got the DX, but I only have to wait one more month!!! Well untill I can get started again.

I think you are feeling the way I do (only guessing)

But without the DX you feel that your "crazy" .....I feel this way, so just a thought.

Amber

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Guest dionna

#2, #3 including feeling faint or fainting -yeah interesting- but i don't think of it as a chore, #4, and #6. when i start going to sleep i twitch and jerk more than usual and sometime i go completely numb and can't even feel what i am touching or where or how my body is positioned. everything always feels so heavy too. i am mostly ice cold as well in the hands, feet, and nose.

if you are crazy.......... we all are crazy.............. but my psych doc says i'm not so.............. i would say none of us are............... and i went to the psych doc a few times i might add.............. so no worries.

good luck on the DX, i waited almost a year and a half but i was fortunate to be going to the doctor everyday and i stayed in the hospital for 8 months.

dionna :)

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Thanks guys!! I needed to hear that!!! I've been in therapy off and on for 15 years (for totally different things than disease, but nonetheless....I've still been going!) and my doc says that I'm quite sane. She's wonderful and I wish that I had the money to keep seeing her. However, medical bills have taken over our lives and that's where all of our money seems to be going these days!! :(

I noticed that no one has the problems swallowing..... :o . I read it on a website somewhere that dysphasia is a symptom of Dysautonomia and/or POTS, but only on one and I can't remember which one (of course!!!). It doesn't seem as though this is a very common symptom, but it still could be a symptom, right? I'm very hopeful that once I start the treatment for all this, that I'll be able to swallow solid food again!!! It's been a year now......(sigh)

I thought that I'd share my most embarassing moment of the week..........

I called my sister yesterday and in the time it took me to dial her number and then when I was supposed to put the phone to my ear......I had already forgotten that I had even called anyone and I put the phone down and took the laundry from the washer and put into the dryer. Then I thought, oh, I should call my sister and I picked the phone back up and it was flashing a busy signal in my ear. I thought that that was weird, but didn't think much of it. Then I called my sister and she asked me if I was doing laundry. I said, "No, why?" (having already forgotten that I WAS doing laundry). She told me what I had done and I was super embarassed. The worst part was the I never even started the dryer!!!! UGH! Sometimes, I feel like a real idiot!!!! :(:):(:angry:

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You are not crazy although I certainly understand why you feel this way. This illness can do it too you!

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