How to get diagnosed? what type of Doctor do we go to?

[drios]

I suspect my daughter might have this. We have been looking for a diagnosis of all her symptoms, body aches and pains, her body does not regulate temperature, numbness, fatigue, stomach issues, fast and slow palpitations.... where do I start to get her tested?

 

[Pistol]

Hello @drios  welcome to this forum! I am sorry that you have to come here for answers, especially if it concerns your child! --- In Reality you would start with the most distressing symptom and see a specialist for that. So - if she suffers mostly from GI distress then you would see a GI specialist. If she really minds tachycardia or palpitations she might want to see a cardiologist. And if unexplained pains, numbness etc bother her then you may want to take her to see a neurologist. 

The problem here is that there is no ONE symptom that would necessarily lead a physician to a diagnosis of dysautonomia, except if she suffers from tachycardia upon standing she might have POTS. I would start by bringing up any concerns or suspicions to her PCP and go from there. Autonomic specialists have usually very long waiting lists, plus they may expect that basic autonomic testing has already been done. I do not know what testing has been done for her but I would look into seeing someone at a major hospital or university clinic, if your PCP is not already suggesting someone to refer her to. 

 

[Ancient Mariner]

I too am very sorry to hear about your daughter.  My PCP is wonderful, and sent me to numerous specialists when I started having very high blood pressure, inability to stand long, palpitations etc.  I started doing my own research after multiple tests, doctors and diagnoses over a period of years (since 2014) gave me no answer.  A few years into it I met a woman with Parkinson’s who talked non stop about her symptoms.  I found her annoying but when I recognized my having similar symptoms, I asked my 2nd Neurologist if I could possibly have PD.  He happily handed over Carbidopa/Levadopa medication.  This was after he previously diagnosed me with brain seizures and put me on medication for that, which I took for a year.  I changed to Neurologists (#3) and found out the tsunamis I felt multiple times a day were actually Parkinson related internal tremors.  

Upon still having high BP issues (Neurologists #1, 2 and 3 never took my sitting to standing BP), I discovered my low BP when I nearly passed out.  It was 53/33.   I mistakenly thought I was having low blood sugar for years.  Having been hospitalized for an ocular migraine, and taking my log of BP #’s with me, it ultimately led to a diagnosis of Dysautonomia by my cardiologist.  At a follow up visit with Neurologist #3, she handed me a paper on Multiple System Atrophy, with no other explanation.  I was ecstatic that I finally found an answer, until I got home and read what MSA was, landing me in a deep depression.  

I eventually found a mentor from the local Parkinson’s website who suggested I try the Neuroscience Center at the nearby University of California.  It took four harrowing months to get an appointment.  Neurologist #4 ran tests which showed I did not have MSA. (Blood tests also revealed I had very high levels of Vitamin B6, also doctor prescribed, which was causing neuropathy in my feet and legs).  Stopping B6 resolved that issue.

My excellent PCP told me how much I had educated her.  She diagnosed her father-in-law with Parkinson’s and ultimately with MSA because she listened, and took seriously, my complaints.  He unfortunately passed away this past December.

The upshot of this monologue is I did my own research and was not afraid to ask questions, or change doctors. I recommend keeping a journal of symptoms (something my husband had me do when I was diagnosed with breast cancer, and then radiation pneumonitis.20 years ago)  I take a log of my BP’s with me to every doctor visit, hospitalization and test.  My husband recently took me to the  ER one night when my BP was 234/116.  With no indications of stroke, I was sent home even though my BP was 197/84 and I’m pretty sure the log helped spare me from more tests.

I have not seen the woman with Parkinson’s since before the pandemic, but when I do I shall thank her for helping me diagnose my own Parkinson’s.   As for the first Neurology Specialist I saw, he said “it was all in my head.”  My PCP and I both laughed when I said he was right, it is “all in my head”.   If you should think I am making light of this horrid condition, be assured I am not.  I have found that this is the only way I can deal with it.  And there is so much more to this long journey that I will not subject you to. By the way, I love Neurologist #4, she’s a keeper.  

My prayers are with you and your daughter.  I have found meditation useful.  There are many sources that can help, I happen to use the Calm app.