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robindancer5678 avatar

After diagnosis, do you continue to see your neurologist?

Neuropathy | Last Active: Aug 24 9:13am | Replies (56)

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Profile picture for Ray Kemble @ray666

You're thinking much as I did, @robindancer5678, about a year after I'd gotten my diagnosis. Mine is chronic idiopathic axonal polyneuropathy (or CIAP, if you're pressed from time). I, too, chewed on that word "idiopathic," balking at the idea of "unknown" and wondering if a different kind of doctor might be of help. In the end, I chose another neurologist, but one whose shingle also read "Physiatrist." I was hoping a more holistic approach might be helpful.

Well, it was, and it wasn't. Today, I tell people I have one and one-half neurologists. The "one" is my original neurologist; these days, we still do follow-ups, but mostly for chit-chat. (It gives me some comfort just to know we're still connected.)

The "one-half" is the physiatrist. I no longer see him, but we keep in touch by phone. (Only recently, he made a minor adjustment in my medication.

So, to answer your question: Is it worth doing follow-ups? My answer would have to be Yes, and No. I suppose you might say I do "low-intensity" follow-ups, if for no other reason to know I've two doctors I could call if my one symptom (bad balance) should suddenly worsen.

My very best to you!
Ray (@ray666)

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Replies to "You're thinking much as I did, @robindancer5678, about a year after I'd gotten my diagnosis. Mine..."

Good evening, Ray (or, Good morning!) ~
I remember those days, too - in fact, our family doctor, who drove a black Hudson (or something older) and carried the proverbial black bag, also dispensed all Rx medications from the closet in his office. If it was a refrigerated liquid prescription, he'd have his secretary fetch that from a refrigerator closer to her desk. Those were the days...