I am curious about this topic, which was mentioned during a recent doctor’s appointment. I have been sick for 15 months with vague but debilitating symptoms. The short version is I had sinus surgery 02/2016, developed Shingles & mono 4 months later that was the result of an undetected sinus infection. Treatment with antibiotics and steriods for a month cleared the infection, but I have been left with other problems. I have heart palpitations, GI problems, fainting, dizziness, extreme fatigue, weakness, body temperature problems and with tingling sensations in my legs and lung pain. I have been scanned, stress tested, tilt table test, endoscopy, colonoscopy, EMG, ECG, heart ultrsound, blood work and now have a loop recorder for the heart. I get a swelling sensation in my chest on the left side that causes dizziness, belching, pain and fatigue. I do have a hiatel hernia and gastritis. I am gluten free, dairy free, red meat free and have been to 15 doctors. I went to running 3 miles a day, lifting 50 pound bags of grain and hay, working full time and taking care of my family. I presently can do small amounts of housework. The last doctor mentioned Autonomic Dysfunction and told me to research…google is vague and cannot find a doctor to who treats this disorder. Any suggestions wil be helpful…running out of options.
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Hi Tuckerdoodle (your username made me giggle. I’d be interested in hearing the story behind it.)
That is quite the list of conditions. I can only imagine that you have had a rough journey of appointments and few answers over the past 15 months. I hope that I can connect you with other members who can share experiences that may help your investigations.
John provides further reading in this discussion thread:
– Cardiac autonomic neuropathy aka Cardiovascular autonomic dysfunction https://connect.mayoclinic.org/discussion/cardiac-autonomic-neuropathy-aka-cardiovascular-autonomic-dysfunction/
@brie87144 describes similar symptoms and talks about autonomic dysfunction in this discussion:
– Esophagus issues https://connect.mayoclinic.org/discussion/esophagus-issues/
And while it doesn’t sound like you are a teen, I thought you might like to read through this older discussion
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/
Other than telling you to research autonomic dysfunction, what does your doctor suggest as the next steps?
Thank you so much for responding ! And no, I am not a teenager, have a teenager though…the doctors really have no idea of what to do. Today, I fainted just walking across the back yard and it is frightening as well as annoying. My day is then spent on the sofa recovering. The Neurologist suggested either Mayo or Hopkins, I live closest to Hopkins (NJ). And it is truely an investigation and I am the lead investigator, which also is frustrating. Something with my system feels off, or unbalanced and seems to set in motion a chain reaction of events, fainting, weakness, dizziness, GI upset ect. . Since I have several doctors, Neurologist, Cardiologist, GI, I would like to find “a” doctor to oversee everything but haven’t had any luck. I was hoping there was a specific field for this, but it doesn’t look like it…thanks for the links, maybe they can shed some light. Tucker is my poodle mix that will actually sense when I am going to have a “bad” day and literally sit on top of me and stare at me. It freaks me out sometimes, lol….
Hello @tuckerdoodle, I would like to welcome you to Mayo Connect along with Colleen. I don’t have the same health issues but I can relate to searching for answers for my own health conditions. I think you have a head start since you have found Connect and are asking questions. I’m hoping others are able to share some helpful information. I saw a patient video that I think may be helpful.
What happens when you have a disease doctors can’t diagnose – TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
I use Google Scholar (https://scholar.google.com/) when looking for hard to find information. You can click 2017 in the left column to get the most recent information. I did a search on your phrase “autonomic dysfunction treatments” and came up with quite a bit of information.
Keep pushing your doctor for answers. You are your best advocate!
Hello @johnbishop, and thank you so much for the video from Ted…it was very interesting and kinda scary also. It nevers stops to amaze me when you have a case in which you have to think outside the box, doctors rely on “it is all in your head” diagnosis. Sad. I have learned to avoid trigger words, emotions and mentioning certain symptoms to keep from losing a doctors attention. You can literally watch their interest disappear in your case. And the standard relpy of, do this test and I will see you back in 3 months drives me up a wall. Why 3 months ? Are things going to be better in that time period, no, no they are not…so the patient lives in limbo, waiting, hoping and praying. Thank you again…
Hello Tuckerdoodle, I feel for you and what you’re going through. I also have been going through all of your problems starting way back when. It got so my poor, normally very understanding, husband said “maybe you should do an internet search on hypochondria”; until I collapsed at a restaurant sitting across from him he noticed my eyeballs racing horizontally back and forth and rushed me to the ER. The ER doctor ordered a brain MRI and said I should see a neurologist ASAP. It took 6 mos. for a Doctor to say you have ataxia – get a single point can with triangular base and make it your new best friend. Two months ago, I got up out of bed at 3 am on a Sunday and went online and opened up the Mayo website and requested an appointment I heard back from them the following day, completed a medical history form; and, a week later they set me up as a client with complex medical issues. I’ll be going to Mayo in Rochester in August and pray they can help me. So yes, Tuckerdoodle, I understand your frustration and pray all goes well for you.
I wish you good luck at Mayo…totally understand the husband thing. I had several MRI’s, head, neck, back, liver ect…all neg. But thank you for responding and offering help & wisdom, very much appreciated ! Good luck & prayers for you and your husband.
I have been diagnosed neurogenic orthostatic hypotension. I am now wheelchair bound. No blood pressure when I stand so I get short of breath and pass out. I have been or medidrine and Northera. Nothing raises blood pressure. HELP
I have an autonomic nervous dysfunction and would appreciate hearing from others with the same problem or joining support groups.
Thanks. I was diagnosed 3 years ago following several admissions to hospital.
I also have been diagnosed. I was diagnosed 2 months ago after being hospitalized for a week. There are several Facebook support groups on Facebook that I have joined and have given me lots of support and answers