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Mydoggielovesme2

Newly Diagnosed, With Many Questions.

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Let me tell you a little about myself. I was working full time when I had my first severe episode. Fainted, with slight seizure after. The one good thing is that I worked in a Physians office with 3 Drs and several nurses. I was taken to an exam rm where the Drs tried to figure out why I fainted. Since I am allergic to so many thing, we just assumed this to be the cause. I was told to rest for a while and see how I felt. Well after about twenty min of laying down I ask the nurse ( a good friend) if I could get up. So we slowly started to sit me up, instantly I fainted, and this time I was out for several minutes. When I finally started to figure out something must be really wrong was my friend was crying, all three Drs working on me, and an ambulance was there. This was in 2007.

This was the beginning of **** for me. In a short amount of time I had MRIs, ECG, and an EP study. Told I had inappropriate sinus tachycardia, take these meds and go home. If only that easy. After another six months passed I was given a tilt table and told I had POTS. More med changes. This Dr advised me to apply for disability as I would probably never work again. Which I did do with the greatest amount of feeling of worthlessness. How can one lose control over your life in what seemed to but a normal common existence.

One thing I want to say is that I went from 2007 until just a few wks ago thinking all I had was a heart problem. No one could explain any of the other symptoms I was having, and no one would listen either.

Finally a new Electrophysiologist visited our town, and I was able, with much struggle from my cardiologist, to get in to see her. Truly a God send. Within 30 min, she said "you have dysautonomia", then for another hour she explained how all the things I have going on are connected. So many emotions, relief, anger, even vindication-- I wasn't crazy after all.

So now the next step for me is going to Mayo clinic in Az. Per her advice. Has anyone been? Seeing a Dr Goodman in the neuro dept. I go in 7 wks.

Lastly I would like to say thank you to all you fellow forum posters. Just knowing that we are not alone, has helped me so much. I hope to be able in some small way to return the gift of hope you have given me!

So that's my intro to you. Questions to follow. Thanks for reading.

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The one bit of advice I like to give any dysautonomia/POTS patient is don't be a victim to the "practicing doctors". What I mean by this is that were simply labeled for having a collection of symptoms. Work towards finding the root cause and attempt to fix that. This site has a good list (not on the forum) of things that could be causing your autonomic dysfunction. Some doctors will be quick to dismiss or overlook possibilities Also try to keep some normality in your life. I work 40+ hours a week. I work on my house. I go to the gym 5 times a week. **** yes this is all a struggle but I keep pushing forward. I do believe laying around for hours/days is the worse thing we can do. If a doctor doesn't seem to understand whats going on I find a new one. Trust your gut instinct I've learned to since an IV treatment and beta blockers that put me in a horrible state last year. If meds work for you take them if they don't stop, trust your gut instinct.

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Welcome to the forum - sorry you have had all these bad experiences but, glad you have hope of proper diagnosis and treatment - I think you have experienced what most of us have....years of symptoms that seem to be unrelated - lots of different work ups and MD opinions (or lack of opinion) and now, on the right track to a proper diagnosis. Dysautonomia covers such a wide variety of disorders yet, is still a relatively "rare" condition with which most healthcare professionals are unfamiliar. I hope you find the answers you need in order to obtain the correct treatments and medications. Don't give up hope - the answers are out there - keep digging and asking - there are always those who are negative and lob lots of negative thoughts and prognoses your way - don't give into them - I was "predicted" to die 6 years ago - I'm still quite alive, working full-time, and caring for an elderly parent. - I wish you good luck and lots of support! :D

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Welcome to the forum! Thanks for sharing your story and hopefully your questions will be answered!

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Thank you all for the encouraging words. It took me a few years to realize that I was going to have to find my own way through this. I knew that whatever was going on in my body was real. No matter what Drs said. Thankfully I have a wonderful husband who is so supportive and has helped me find my way.

Some of the things I've done to cope is: bought an electric bicycle ( so when granddaughter wants to go for rides, I can go- most of the time), bought a wheelchair so I can go shopping with family or friends. Even used it at Yellowstone-family vacation-boy was that an adventure.

I guess what I'm trying to say is, I thought I was coping, UNTIL, I was told what I really have. Now I want real answers.

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