Meeting with a neurologist, what to expect? What to ask for?

[joiedevivre]

I have my first neurologist appointment. I already have a POTS diagnosis, but no one is managing my treatment, nor has enquired into the cause. I've been on midodrine and Florinef, neither helped. My neurologist is just a regular one, and for all I know hasn't treated POTS patients. What to expect in my visit? Is there a physical exam ( I like to be aware before I'm asked to change into a gown)? Any tests to ask for, or treatments? Thanks for any advice!

[Pistol]

Well - I saw a neurologist for seizures but she did not know diddly about POTS. Thank god I already had a specialist at that time. They do a neurological exam - check reflexes, check your eyes, check for circulation in your feet … they ask questions like : Who is the prez" etc. And of course they ask about your symptoms in general. I hope this one can help you - good luck!!!

[Clb75]

If you’re looking for someone to manage Pots, you may have better luck with an electrophysiologist. These are a special type of cardiologists that usually manage autonomic disorders. A general neurologist may or may not have the background, they would typically work with general neurological issues like migraines, seizures etc. 

[k1pt2]

I have learned to not expect much from doctors.  If they know nothing about the condition, you leave frustrated and disappointed.  Most don't know much and end up taking a shot in the dark with a prescription.  I have been going to doctors for a year now with little success.  Even electrophysiologists who are cardiologists tell me I need to go to a place that specializes in dysautonomia which is usually not close to where you live, has a year long wait or isn't covered by insurance. I hope your visit is successful.  Let us know how it turned out.

[WinterSown]

I'm sorry you are going through that. Who diagnosed your POTS and why can't they treat you? Why do you have to go to a different doctor?  This so bugs me. It would be nice if your doctor would do both. Grrrr. My neuro, who is also a shrink, only works with me on balance, gait and fog; she oversees my neurotherapy,  the EP manages my drugs, and the cardiologist focuses on entire physical health,  mental well being, restoring and enriching the quality of my life; he's all about balancing heart, mind, body and soul. The three of them work in concert with me so that what they individually do overlaps with what the others are doing; it's very thorough care. 

 The neuro has been wonderful,  she was recommended by the cardiologist and from the beginning was in tune with my care--I didn't have to prove anything to her nor did she have to retest me to prove the cardiologist and EPs dysautonomia diagnosis. She checks my bilateral strength and gait, my vitals, etc, and has sent me for xrays, dopplers and sonograms of my neck and head. She doesn't do any bloodwork because the other doctors do that. Yesterday I called her office and renewed my PT script for the scrunchy vertebrae found in the doppler; they're sending it to the PT doctor and I don't have to come in for a recheck. Cool beans; everything in dysautonomia life should be so easy.

WS