I just walked in the door from the neuroligist, and I must say...it wasn't very helpful. OK, so here's my story. I was dianosed by an EP doc about 2 years ago with 'Dysautonomia'. Well, he thinks I have it. (I know I do) But since he finally did a successful ablation, he told me I didn't need to come back. Well, now they're telling me that I have SVT, I wore an event monitor for 21 days~ still waiting on the results. But, I'm back!!

So, the neurologist is waiting to get the OK from the heart doc for me to do rehab! I was taking out of thearpy because my heart was acting up, that's what made me go back to the EP doc. I haven't actually seen him, yet....I've been meeting with his nurse pract.~ I have an appt with him in OCT. (There was a waiting list to get an appt. What kind of crap is that???)

OK, so I asked the neurologist if she thought I had it and she said that dysautonmia is more like a description, and not an actual diagonses?? And that you can only treat the symptoms. I sure wish someone would tell me something I don't know, or tell me something that makes a little more sense.

I mean I understand whats going on, and if it wasn't for the disability judge~ I wouldn't have to 'prove' a thing. But, the judge doesn't get it, so I thought if I had the right doctors backing me up, then I'd be alright. But how am I suppose to find the right docs. if they keep shuffling me around. Personal, I think the EP doctor should be the one taking this on. But I think he makes more money in the OR, and that's why it's so hard to get an actual appt, with him. It sucks when you actually find someone who understands, but that they're to busy to see you??

I don't know if I'm making any sense, I'm sorry. I'm just fustrated! I wish I could sit ALL my doctors down at the same time, and lay everything on the table! The primary care doc, the EP doc, the neurologist, the urologist, the OBGYN, and my Psych!!! I don't want to be captain anymore! Let them figure it out together~ Let one of them run this show! I'm over it!

I hear your frustration, FEEL your frustration for many of the same reasons and I am sorry.

Follow your gut and intuition at every turn.

I'm in the process of accepting that there is noone who is going to be the quarterback or captain for my health journey. It's up to me and God. Scary, isn't it?

Nitekitty and others on this forum have done research on the root causes of some dysautonomia symptoms. You may want to search through her posts and see what more you can learn. I'm in the process of doing the same now that I am feeling well enough to do so.

This is a great forum for support, so keep posting and SHARE what you learn! Peace,

Sorry you are going through this but unfortunatley I find the docs don't work together...you get pieces from different ones and then you are the 'captain'. I wish it were different.

As for waiting times I'm used to that here in Ottawa - the capital of Canada - it is a universal health care system so everything is free but some waiting times are terrible. For most specialists count on at least 10 weeks if not longer. I saw a new neuro at the end of June and he is going to do nerve conduction testing - I was first scheduled for August 18 then got a call the tech isn't in that day so now it is Sept. 8th. For an MRI - depending on what it is for some ppl can wait up to 6-8 months. The gov't is working on improving the waiting times but I haven't seen a difference yet.

Stop wasting your time!

You must see a neurologist who specializes in dysautonomia. These are hard to find, and you usually have to go to a top academic medical institution to see one. Go to Vandy or Cleveland Clinic or Mayo or Johns Hopkins and make sure you see the right doc!

Actually, I spoke with Dr. Sung Lee from the Center of Cardiac and Vascular Research Washington Adventist Hospital in Maryland. He works with Dr. Mark Turco....you may of seen him on Good Morning America~ he did a special about the portable cath lab. Anyways My uncle had gotten me in touch with them, they are suppose to be the best of the best. I had talked to them last year, before i had my 2nd and 3rd ablation to make sure that the doctor I had here was doing the right thing (and he was~ but I alread knew that, I like my ep specialist here!) They were kind enough to review my records and offered to see me if I could get up there~ it is only 4 hrs. away~ and my Mom lives up there. But when I actually spoke with his nurse about coming up there, she was very rude.....and I didn't have the patience to deal with it.....so I stayed here, had the ablations, and now, 9 months later I'm getting dianosed with SVT. I used to have the very low blood pressure, so this is a change for me. I'm just dragging my feet about going out of town. I'd probally have to pay for it of pocket, too. And that's kinda hard when you haven't worked in a couple of years. I guess i need to quit making excuses and just email them again, huh!

So, has anyone out the been to the Center of Cardiac and Vascular, at the Research Washington Adventist Hospital in Maryland?? I'd like a little imput, please??