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I have been going to a cardiologist/electrophysiologist for the past year. While he has been great at helping me with this side of things, I have not seen any other doctors or got help for any of the other problems.

So I went to see a new general physician, and this guy is great!!! He admitted that he didn't know much at all about autonomic dysfunction (diagnosed by cardiologist), and that he had to look it up before talking to me. He was overly enthusiastic about sending me to specialists to determine what all is going on. He assured me that we would figure it out.

I left with a appointment for a neurologist. What should I expect from a neurology visit?

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My neurologist is actually my main POTS doc. She's the one who actually knows what to do with me, what meds to prescribe, what's 'normal'. But, just like how there are cardios and then there are POTS cardios, I think she's a rare find.

That said, she did do a full neuro work up on me my first visit. I know that I've had simpler versions of the routine she put me through, done by my pediatrician back in the day. Reflex testing, walking in a straight line heel to toe, closing your eyes and touching your nose, standing on one foot, follow her finger. Almost like a roadside sobriety test, now that I think about it. Haha.

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I just found a gem of a neuro as I am not 100% satisfied with my POTS dr. He happens to be familiar with POTS, so that's a major plus for me.

He did a full neuro work up, reflexes, balance, poor man's tilt table test, checked my eyes, ordered a bunch of blood work.

He looked at some older tests I had done - brain CT scan and MRI, abdo and pelvic ultrasound.

Plans for future: EEG, nerve conduction study, electromyogram with a q mark.

Can't recall what else.

He is the first dr in 18 mo who not only did not prescribe any meds, but actually encouraged me to wean myself off some of the meds I was taking that made me worse.

Good luck with your appointment.

Alex

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Thanks!

I made mistake of looking on youtube to see examples of typical neuro exam. I really should see this neurologist (and I will), but now I so badly want to cancel the appointment. I didn't know they will test memory and having my memory tested really bothers me. I have had those sort of memory tests numerous times in the past, so I know how the test will go, and I know how I will feel emotionally as a result of it. I know simple questions, being asked to remember a few things should be a painless part of the test, but I am really sensitive to this problem.

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My son's POTS dr is also a neurologist. He has never had a memory test either. Like the others said, mainly coordination tests, ie. touch every finger to thumb, touch finger to nose, walk on tip toes, walk heel to toe, etc.. Checked reflexes...While a cardiologist diagnosed my son, that was the extent of our cardiology experience. In Cleveland we saw a neuro and we have a local neuro.

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