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Hello,I have been lurking around for a couple of months,reading post and learning everything I can about dysautonomia.I am not officially dxed yet,it has been a long road that I am hoping is almost over.I have had problems since my late teenage years but within the last year they have progressed to the point I can not work.I am 35 now and grateful that I had my child and career while I was able.Hopefully I will be able to return to work,I was a hairstylist with my own shop.This all started with severe heat intolerance when I was 16. I had been working outside in the sun and got extremely sick.Couldn't stand up,numbness in my arms and legs,slurred speech.The ER dr told my Mom it was heat exhaustion and to keep me out of the sun.Things progressed gradually,my heart rate and BP would go really high for no reason,I wore 24 hour monitor and had ultrasound of my heart,both showed abnormalities but the drs in my small town would just shrug their shoulders.My PCP was convinced I was depressed and that was all.His famous saying was "Do you feel bad because your depressed or are you depressed because you feel bad...I think your depressed"ARRGH My OB/GYN was the one who ran all the test ,he knew something was wrong.By this time I had 3 miscarriages,my OB did blood test and my ANA was really high,he though maybe Lupus.He sent all the test results to my PCP who wouldn't even talk to me about them,refused to acknowledge I had clinical proof of something other than depression.I finally had my son :angry: and quit going to the DR.Then it hit with a vengance.I would be working,doing someones hair and just fall,be really sick and just lay there in a pile of hair clippings until I felt better.People don't like this...it sorta scares them!I found a new PCP who is wonderful,he advised me to quit working to let my body rest,I was tired all the time and could barely function and I now know in my own mind that my work was not as good as it should have been.I just couldn't think anymore.I realise now it is Brain fog.I am going to Mayo April 22 for testing and hopefully have some answers.I am sorry this is so long,I had just planned on introducing myself and saying Hello to all and Thanks for being here,but stuff just started pouring out.I feels good to get all this off my chest.Thanks,Melanie

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Hello there Melanie. Sadly, your experience with misdiagnosis is all too familiar. Many on this forum, and others, have been down that road.

I'm glad to hear that you're on the path to an accurate diagnosis. I hope that your visit to Mayo gives you some needed answers and direction in coping with your issues.

Welcome! Nina :)

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Guest Julia

Hi Melanie,

I hope things turn for the better soon. In the meantime, I know many of us are very sensitive to chemicals. All the chemicals for hair dyes and perms can really aggrivate things further. When I use hairspray on my hair---I run out of the bathroom away from the airbourne fumes.

I can't go near one of those nail salons---no way. I'm just really careful now around any chemicals. I was exposed to toxins much uglier than that though.

Ink solvents and Ink dyes---nasty lead based stuff!


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