After diagnosis, do you continue to see your neurologist?

Posted by robindancer5678 @robindancer5678, Jul 14, 2023

I was just diagnosed in June 2023 with small fiber polyneuropathy. It developed suddenly in February 2023 with some tingling in my calf and foot and progressed rather quickly to tingling in all extremities and spasms in all extremities. And weirdly some breathing issues. So far we can’t figure out why. I am negative for any autoimmune diseases, medication toxicities or vitamin deficiencies. I am suspecting it may have been due to having COVID in 2021 (long hauler?) or have something to do with my body‘s reaction to vaccines and medications. I had ShinGrix vaccines in late 2022 followed by a Covid booster, followed by a Prolia injection. Anyway, my question is this. Will my neurologist continue to follow me? Or after I’m diagnosed, am I on my own since it is allegedly incurable? It took forever to get an appointment with a neurologist! Believe it or not, even though I am in Baltimore, with great medical institutions around me, there appear to be not enough neurologists.

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Profile picture for julbpat @julbpat

I had a similar experience! Dr W, who ordered the skin biopsies, didn’t talk to me for 2 weeks after someone from the office called to give me the positive results. When he called, he seemed perplexed about my concerns. The next week, I drove to the office and handed the receptionist my list of questions for Dr W. I looked like a crazy person, crying and handing them this piece of paper. A few days later, the OFFICE MANAGER - not a nurse - called me with his answers. 1. There is no cure, but you won’t die from this …etc etc..
I knew this doctor/patient relationship would never work, and I started looking for someone who I felt comfortable with for the long term. I am fortunate to live in a larger city with lots of options. I’m aware not everyone has choices.

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I have experienced the same type issues. After completing chemo for NHL in 2005, I developed excruciating pain. First diagnosis was fibromyalgia. I was eventually diagnosed with CIPN. I’ve tried many things, but the neurologist doesn’t seem to have any interest in following me or suggesting new treatment options. It’s so frustrating that sometimes, like this morning, I just cry. I would really like to find a neurologist who would look at options and at least act like they care. That sounds harsh, but it doesn’t feel good to get a diagnosis and be dismissed.

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Profile picture for julbpat @julbpat

I had a similar experience! Dr W, who ordered the skin biopsies, didn’t talk to me for 2 weeks after someone from the office called to give me the positive results. When he called, he seemed perplexed about my concerns. The next week, I drove to the office and handed the receptionist my list of questions for Dr W. I looked like a crazy person, crying and handing them this piece of paper. A few days later, the OFFICE MANAGER - not a nurse - called me with his answers. 1. There is no cure, but you won’t die from this …etc etc..
I knew this doctor/patient relationship would never work, and I started looking for someone who I felt comfortable with for the long term. I am fortunate to live in a larger city with lots of options. I’m aware not everyone has choices.

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I even had a neurologist tell me years ago, that if I can walk and talk, I’m ok! What a slap in the face

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My neurologist schedules to see me once a year. I was thinking of not going because all he does is a quick evaluation, tell me I am getting worse, and says I can request higher doses of Gabapentin. I always leave feeling depressed. I am going to see him tomorrow and ask him to NOT evaluate me. I have a list to possible treatments, like red light therapy and such and will just ask his opinion on that and a couple of other things.

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I saw a Neurologist at Kaiser who took electrical test and stated I had peripheral nurolygy and alcohol intake should stop. Whic I have stopped drinking any alcohol. I was sent a notification for a follow up appointment a year later. Same procedure same diagnoses! My comment was "well you certainly don't have a very large client list if this is your standard diagnoses". Poor guy got flustered and told me he had other patients that had other medical diagnoses. We ended up both laughing,

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I had my yearly checkup last week. I got a call that my neurologist was unavailable and I was to see the Physician's Assistant. I have found them to be better than most doctors, and this one was no exception. She laughed when I said I don't want an evaluation. I just want to ask questions. I had a list of possible treatments one hears about like laser therapy, red light therapy, etc. She was clear: It is possible that a few might work in unusual cases, but it's best not to waste my money. And if I want to increase my Gabapentin, my kidney function should be monitored.

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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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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...

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Profile picture for bjk3 @bjk3

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...

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Ah, me, too: I can remember our family doctor––and "family doctor" was what he was, on-call to help with my mom's arthritis, my dad's emphysema, my brother's baseball sprains, and my twice-a-week bellyaches (Tues. & Thurs. when I'd be scheduled for gym … odd how that was). I can remember his name, too: Vincent Casey. (I guess it's OK to say his name. I'm sure he's long since gone to the sky where all good family doctors go when they're done caring for their patients. I wonder if they take their black bags with them. Mmm?)

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Profile picture for Ray Kemble @ray666

Ah, me, too: I can remember our family doctor––and "family doctor" was what he was, on-call to help with my mom's arthritis, my dad's emphysema, my brother's baseball sprains, and my twice-a-week bellyaches (Tues. & Thurs. when I'd be scheduled for gym … odd how that was). I can remember his name, too: Vincent Casey. (I guess it's OK to say his name. I'm sure he's long since gone to the sky where all good family doctors go when they're done caring for their patients. I wonder if they take their black bags with them. Mmm?)

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Well, if they did, it was likely they were being called to some "continuing ed" with the Great Physician. Do you think his son was Dr. Ben Casey? I remember our doc's name also...Ralph Ritzman, and what he looked like, especially his bushy eyebrows. He and his wife, Mary, were friends of my parents and always had us over for a summer picnic . Homemade ice cream was ALWAYS on the menu. And yes, he treated every ailment with hardly ever a referral. Since I was sent for allergy testing in Chicago, I know he did, though, on occasion.
I can identify with those regular tummy aches, too. Mine seemed to come on days when a new math concept was to be introduced. The teacher always told us the day before, which gave me all the information I needed to plan ahead - lol.

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Profile picture for bjk3 @bjk3

Well, if they did, it was likely they were being called to some "continuing ed" with the Great Physician. Do you think his son was Dr. Ben Casey? I remember our doc's name also...Ralph Ritzman, and what he looked like, especially his bushy eyebrows. He and his wife, Mary, were friends of my parents and always had us over for a summer picnic . Homemade ice cream was ALWAYS on the menu. And yes, he treated every ailment with hardly ever a referral. Since I was sent for allergy testing in Chicago, I know he did, though, on occasion.
I can identify with those regular tummy aches, too. Mine seemed to come on days when a new math concept was to be introduced. The teacher always told us the day before, which gave me all the information I needed to plan ahead - lol.

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Our doc had integrated himself into the family, too. He'd make ours his last housecall, knowing, after he'd ministered who whomever's ailment he'd come to treat, my dad would shying ask him (shyly, because my mom disapproved), "Would you like a little of the … you know, the, ah … what do you say, before you head home … a little sip of the … "

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Sounds mighty hospitable to me (no pun intended)! It reminds me of one of Sebastian Maniscalco's sketches (except for the "colorful" language), called, "When Your Door Bell Rings - 20 Years Ago v. Today". Not sure what year he did it, so maybe it's more like 30 or 40 years ago now, but it can still be "googled", and it still gives me a chuckle.

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