I’m laying here, unable to sleep as usual, thinking about how hard it had been for me to find doctors that want to be diagnosticians – doctors that want to try and help me figure out what is wrong with me – doctors that want to think outside the box (not horses, or even zebras…I’m talking EMUS!) – doctors that think that I have some worthwhile life left to live at 49.

Yes, I have a great PCP. But I’m new to her, and in the past 6 weeks we have had some very lengthy email exchanges. She doesn’t quite “know me” yet – I get the feeling that she’s still trying to navigate my moods (which range from Pessimistic – wallowing in the Pit of Despair, to Frantic – being consumed by the Pit of Despair, to Optimistically Pessimistic – I am very familiar with the shit in my Pit, and i DOUBT that the Thing outside of my Pit has any worth.)

My husband thinks I will scare my sweet PCP away, Evil Thing that I have become…thanks to my untreated ANS dis-whatever!

“We” cannot find doctors to treat me. If “we” do, there are 4-6 month long waiting lists, appointments are triple booked….each body part is treated by different specialist, and of course, none of them communicate with one another. How delightful! This is why I need YOUR HELP. With YOUR HELP, I will start a webpage that lists all the doctors that have successfully diagnosed and treated every dysautonomic, spoon, POTSie and anyone suffering from any incarnation of an Autonomic Nervous System Disorder/Condition/Dysfunction ever known.

I know this has been tried before on certain social media sites – but something needs to be done NOW!

I am at the end of my rope.

No human being should have to go through the humiliation and agony of being misdiagnosed and tossed aside by physicians as if you were a piece of trash. No one.

I will make a webpage that can guide people to doctors that specialize in ANS disorders that will help diagnose their symptoms and not placate them with platitudes and frivolous dx’s of “anxiety” and “dehydration.”

Now that I think about it – I will make a webpage with recommendations of ALL the fantastic, helpful, and understanding doctors that have been helpful for the conditions that I have suffered with. 

If you hear me – if you understand this frustration and have sat in the bottom of the Pit of Despair thinking there is no way out…… Then PLEASE share your doctors’ demographic information with me so that I can create a true HELP Page for people like us…

Just think of all the people you will be helping…and possibly saving…

THANKS!!

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Comments
  1. jenleigh409 says:

    I am enduring this right now! 36, no life. Thrown away. I can’t work. I am not allowed to drive due to the seizures that occur after asystole. I had a pacemaker put in, but no one can help! I totally understand. I am in financial ruin, and SS/Disability says nope, you can work too. I am trying so hard to survive, and I feel like I am spinning. Everyone in my family is like here, go do this thing…as if it is just that easy! I want to, I have never been like this before. For the past year, my life has literally been unraveling, and I have been begging for help from doctors and a way to put my life back together. I was diagnosed with Autonomic Dysfunction, then went to a specialist, and was told they don’t think that is what it is, but three doctors said it was, and now I am back at square one. Meanwhile, I have absolutely no life, and the depression and anxiety is taking its toll. And like you, the doctors simply will not talk to each other. I found myself relaying information, as best as I could understand it, back and forth, and getting nowhere. I don’t know what else to do.

  2. crshore says:

    I just want to tell you I hear you and totally understand. I have gone through the EXACT same thing – no one wanted to put the final diagnostic “stamp” on anything….doctors stated they wouldn’t write up a return-to-work notes because I was so symptomatic, but were unwilling to fill out any disability paperwork.

    I have truly been through the humiliation and agony, and I do understand. I got the anxiety, depression, vertigo diagnoses, too. I wish I could give some information on decent medical professionals, but I’ve found so few!

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