Help Getting a Diagnosis

[Brutesky1]

Hi,I am 3.5 years into this health ordeal that has completely ruined my life.

 

I have been to a dozen doctors and still cannot get a proper diagnosis: Paroxysmal AFIB, IBS, Depression and other nonsense.

I tried naturopaths/acupuncture to no success.

Out of the blue I get daily attacks of indigestion/AFIB. They last hours and I cannot function while they occur. The Electrophysioligist wants to cauterize the heart to stop the AFIB but has no clue why I get the indigestion attacks and doesn't know if they will be solved by doing the procedure. If I burp enough times the AFIB stops eventually  

6 Gastrentoroogists straight don't find anything wrong with my stomach. I did gastroscopies (2), 24 HR phone test. Tried Nexium , Panto etc of course.

I have a small HH.......

 

I tried many diets....

 

When I take Ativan it helps a bit. Flecainide and Metropolol help a lot but mostly with the AFIB.

My theory is that the vagus nerve is causing the Gastro and Heart is causing the issues. Should I see a neurologist next? How would he test the vagus nerve?

fyi I am in Canada and it takes a year to see  neurologist so I would drive to Northeast US and pay for one privately  

Please I need everyone's input how to proceed. 

 

Thanks in advance. 

[Katybug]

We can't give medical advice,  so I can't really say who you should see next. However, we do have a physician list that may help you find a doctor in the geographical area you are considering. I think I received an email yesterday for a NY doctor so I will look up that name and post here for you too since it's not in the physician list yet.

Here's the link to the list:

http://dinet.org/index.php/physician-list?view=physicians

[Katybug]

The additional doctor's name I just received is Dr. William Slater, Cardiologist, NYU in NYC.

[yogini]

Irregular heartbeats sometimes feel like a burp, so that could be party of your problem.  It is hard to know what is going on with many of us.  If you are having problems of indigestion, you should do research on gastric co-conditions.  Many dysautonomia patients have gastroparesis, celiac and/or other conditions.  You can do research and get testing to see if any of these conditions apply to you.  Even if you do not have any gastric condition, you can identify foods that trigger you by keeping track of your diet.

I would also do LOTS of research and get a second opinion before "cauterizing" the heart.  If this is the same thing as an ablation, isn't recommended in many cases if you have dysautonomia.  

[pinky]

brutesky1, I feel for you and have similar autonomic, gastric and heart related maladies. I too am wondering what kind of doctor to go see next. I have an electrophysicist and had another one that retired, and they by and large don't impress me with knowledge about what to do with me.My family doc. seems to know as much except he doesn't have the tools at his disposal that the ep's do. I have a peripheral neuropathy too and have much better luck getting a handle on that, but with the autonomic thing it just seems to me that there are very few truly qualified physicians out there. the two electrophysicists ive had admitted to me that they knew just a little bit, and my top rated neuro didn't want to touch my autonomic problems, he sent me to the ep's. lol I think my immunoglobulin infusions for the peripheral neuropathy help my autonomic problems more than anything else, I say this because I had some breathing problems and the infusions helped with that. just my opinions though.

[Brutesky1]

Stop the press...in case others reading this post have the same issues I wanted to reach out and maybe help some of them. 

 

In in the last few days since I initially posted suffering I tried reducing my sugar and carb intake at lunch and dinner to virtually 0. Only at breakfast am I allowing myself a piece of whole wheat bread and fruit. 

 

I have had had an improvement of 95% since then. No bloating , no trapped air and therefore no AFIB!!!!!

 

Seems as though my body is not digesting sugar/carbs and they ferment  

i will update in a week on my progress. 

[corina]

That's great news, I'm really happy for you! Hope others will benefit from this information also!

[lewis]

I too have this same burp Afib or pvc. Sometimes it happens when I burp, sometimes it happens until I burp then it goes away. I would have it happen 30 times a day until I did the whole 30 diet and now maintain a mostly ketogenic diet except for lower carb vegetables. I may only have one burp episode a day if that.  I too have a small HH That had only been seen on half of my endiscopies. 

If you have to wait a year or are paying out of pocket to see a neurologist, make sure It's one that specializes in dysautonomia other wise you'll leave frustrated. I went through 4 nuerologists and 4 cardiologists before i find one that specializes in dysautonomia. It was a long road that led to know where since they never came up with any reason or treatment. So I exercise alot and eat strict and I have most of my life back besides an occasional flare.