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After diagnosis, do you continue to see your neurologist?
Neuropathy | Last Active: Aug 24 9:13am | Replies (56)Comment receiving replies
Hi again John. I would like to think there’s an identifiable cause for this peripheral neuropathy so that I can address it, but I’m starting to think that it’s idiopathic and it’ll be a question of just managing it. Which is why I’m wondering if I would be seeing the neurologist again, or if I should try and find a different kind of specialist to approach managing it from a holistic perspective.
Replies to "Hi again John. I would like to think there’s an identifiable cause for this peripheral neuropathy..."
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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Keep seeing your neurologist! Maintain communication, because this disease may continue to change on you, and you will need the neurologist’s expertise. Also they keep up with the latest research and development. My neurologist works with me on medication dose changes, prescribes a compounded pain cream, and documents changes in my condition. He is also my resource for neurological testing and interpretation as needed. If you have a neurological condition, you will always need the care of a neurologist. They will help you decide on the frequency and type of follow-up you need from them. And if you have changes, it’s easy to get an appointment as needed.