Dr. Says look for Neuro Specialists for Dysautonomia

I'm a recent newbie to this group and also to AD.  I just want to say how disheartening is that people with AD/Dysautonomia are so under served by the medical community.  It was actually at Neuro-Otolaryngologist that recommended I see a cardio and a neuro.  He recognized that the balance issues, cardio issues and headaches were not associated with and ENT problem, but were something autonomic.  I consider myself very very fortunate to have been seen by a Neuro-ENT.  I thought he was a "regular" ENT.  The neurologist I followed up with suggested that whenever I see a specialist from now on for anything, to check and see if there is a neuro sub-specialty and look for that type of doctor, i.e. Neuro-Opthamologist, Neuro-ENT, Neuro-psychiatry, etc. anything with Neuro in front of it - when available.  Just wanted to share in case it can help someone else.  

[Heiferly]

Thanks for posting this tip.  I "accidentally" ended up seeing a neuro-ophthalmologist (after funneling my way up the ranks through the emergency department, past the ED's eye doc, past a regular ophthalmologist) for what ended up being a retina injury I got secondary to a head injury from a syncope.  He surprised me by keeping me on as his patient so he's now my ongoing eye doctor (rather than passing me back down to a regular ophthalmologist or optometrist) and is working with me on fixing my glasses Rx which turned out to be wrong due to a problem that hadn't been caught by anyone in the past.

I also see a sleep neurologist (rather than a sleep pulmonologist, which I think is the subspecialty of most sleep doctors) to address my narcolepsy with cataplexy, which makes sense not just because (unlike sleep apnea) narcolepsy is a brain disease, but also obviously because my dysautonomia has to be taken into account.  

I wonder how many other specialties have "neuro" subspecialists.  As you mentioned, there are neuropsych docs.  I'd never heard of neuro-ENT, so that's good to know!!  

I know there are subspecialties within neurology itself (autonomic neurologists, neuromuscular specialists, migraine specialists, epilepsy specialists, neurosurgeons, etc.) ... can anyone think of more "neuro" subspecialists in other fields that they know of?

[mtgardner]

Heiferly, it will be interesting to see this list grow!

There are a lot of emerging sub-specialties in neurology and I have come across mention of these:

Autonomic Disorders  
Behavioral Neurology & Neuropsychiatry
Clinical Neuromuscular Pathology
Geriatric Neurology
Headache Medicine
Neurocritical Care
Neuroimaging
Neuro-Oncology
Neuro-opthamology
Neurootology
Neurolarynology

I think the point ParrotPal makes is valid.  The problem comes with access.  Supposedly there are 75 neurolarynology specialists in the U.S. right now.  The closest one I have found so far to me is in Colorado.  I live in very northern California.  I could actually use one right now just like I could very much use an autonomic testing lab and the closest one of any size is in Minnesota.  Supposedly there are over a million people with some form of autonomic dysfunction in the U.S..  I have to conclude a very large number of them are under-served by the medical community.  Marie

[Heiferly]

I can only conclude one thing:  y'all are going to have to move to the Midwest and camp out with me!!  The more the merrier!!!  :-D  

Sadly, I'm pretty sure Ohio has the #1 heart hospital in the country (Cleveland Clinic has had this distinction for ? years running) as well as several other nationally ranked heart hospitals is because many of the major cities in the immediate area are also nationally-ranked for obesity.  :-(  We probably have high rates of heart disease, and thus high demand?  Maybe you fancy folks out West just need to fatten up?  SoCal is one of the fittest areas in the country, right?  :-p

[mtgardner]

You made me laugh out loud!  :)  

Maybe it is because I don't live in "southern" California, but I have had a weight problem for years.  Actually I have just this month finally got my thyroid meds right so that might be helpful plus I really don't handle carbs well.  I do much better with proteins and get a drop in BP with carbs.

Anyway, I think you are absolutely right spot on that there are areas in the U.S. where centers have developed that have a richness of specialists.  Ohio is definitely a stellar example expecially for autonomic dysfunction and cardiac abnormalities.  It is amazing the number of doctors available there.

That said we all either need to go camp on your doorstep or have a big slumber party in between all of our appts. !!  Marie      

[tonyad]

Parrot pal:  Thanks for the post..Good to know.

Marie: Wow! you gave an Awesome list for everyone. There are a lot of
         Neuro _______'s out there!  

~Tonya