Aggravating News!

I’m so frustrated right now.  Neurologists can kiss my ass!

pure muscle there people lol

I waited a year and a half to get my tilt table test and be diagnosed, which was okay bc the doctors were positive I had POTS so I was kinda being medicated (only got to see them twice).  Six months later, I finally see my Cardiologist for the first time since being diagnosed to find out when I asked general questions.. that he didn’t know anything about POTS at all except to try Midodrine then a Beta Blocker.  That’s it.  The first Cardiologist (they’re a team) put me on the Midodrine, then this guy refuses to give me anything else until I’m diagnosed even though the POTS specialist said to go ahead.  But this non POTS specialist swore I didn’t have it.  So after the tilt he gives me a beta blocker… metroprolol I think it was and yet again it worked for a while, then stopped working and then started making me really sick.  That was last November!

So I saw him again I think it was in April when he confessed to not knowing anything else about it, and says he wants to personally refer me to this specialist, who’s actually a Neurologist, bc he wanted to be able to check in on me in 6 months time, and if he did it through the hospital it would take six months before I got an appointment with the Neurologist.  Well he was wrong.  With his personal referral that got sent out back in April when I saw him (I called to make sure it got done, bc they forgot to set me up with the tilt table test making me wait 8 months longer than I should have) anyway, with his referral my appointment with the Neurologist isn’t until March 1, 2011!!!!!!!!!!!

I’m feeling very angry and discouraged.  There will have been only 2 medications tried in over 3 years.  Am I going to have to wait a year in between every appointment with this guy???  I know realistically I am going to have a long struggle find a medication or treatment that works due to my resistance and the fact that it takes all potsies forever, but I want to be on the ball about it!  I feel like I’m not even getting a chance, and it’s going to take me ten times longer.

For my potsie buds… outside of family doctors, how long do you wait for after making an appointment with them?  On average.  I know it takes a while, but 11 months?  I dread the thoughts of being house bound pretty much for another year at least.  And that’s just until I see him.  Makes me feel like they don’t care about my well being.

My mom’s coming over for dinner tonight, so that will be nice to have her to talk to.  Just feeling lost and forgotten about (medical field wise)  Sad.  Nice constant asthma attacks to boot. BOOO!

Ash,

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4 thoughts on “Aggravating News!

  1. Hi Ash,

    I’m so sorry that you are feeling angry and discouraged but I totally understand. I just wish there was something I could do for you so you could stop hurting. Unfortunately, I am in very similar circumstances myself. :*( I have been sick for over 3 years now, and about 2 1/2 of those I’ve been mostly homebound and bed/recliner-ridden. I know exactly how extremely frustrating it all can be.

    However, I DO have a good team of doctors and they have been working together with me in trying to figure out anything we can possibly do to make things better. It’s just a s-l-o-w, agonizing process, isn’t it?? Have you been to one of the larger hospitals/clinics that specialize in Dysautonomia/POTS Research and Treatment? If not, I would highly recommend that you try to get a referral to one of those. I am currently under the care of Dr. Satish Raj at Vanderbilt Autonomic Dysfunction Center in Nashville, TN. Vandy is one of the leading research facilities in the world for Autonomic Dysfunction. It is truly an amazing place and I would highly recommend it to anyone seeking answers and genuine help with Dysautonomia. Of course, there are a few other places scattered about the U.S. but they are tops in my book and I wouldn’t go anywhere else.

    Anyway, I wanted to let you know that I am very happy to have stumbled upon your blog. I hope that we can be potsie buddies! I am always looking for new friends. I hope you will come visit my blog. I love to make new friends, plus, I have LOTS of great resources there for people who are struggling with Dysautonomia/POTS.

    In the meantime, I will be praying for you. I hope and pray that you find a suitable doctor who will work with you and finds a way to help you.

    Many Blessings,

    Teresa <

    ♥ Too Many Heartbeats ♥

    • thank you so much for your kind words 🙂 they mean’t a lot, and am always up for chatting with other potsies! i will definitely check your blog out too! it’s nice to see what others are doing to try to better such a bad situation. sorry you have been suffering as well 😦 *big hugs* i have not checked out the places you wrote about, bc I’m in Canada. As far as I’ve been able to find, there isn’t a just dysautonomia hospital in Ontario, but that gave me drive to check my options with other provinces!

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