What type of doctor do you get your PN care from?

Posted by dmoreci @dmoreci, Nov 15, 2023

I see a primary care physician for peripheral neuropathy. I learn a lot from this group. Curious if whether other people see their primary care physician OR see a specialist. If a specialist, what kind? Thanks.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@heisenberg34

I saw several pain specialists for my lower back pain after my ski fall back in 2016, Injections, nerve blocks... no help. A friend, who was a nurese, suggester a local D.O. He went through the usual questions and motions. Then he told me to see a local neurologist. So, I went to her to get checked out. She spent an hour and a half with me. I don't even remember everything she did, but, at the end, she wrote scripts for Gabapentin and Diazepam. When I first started taking them, I felt dizzy ans my balance was off. My wife suggested that I try cutting the pills in half. I decided to "tough it out" and keep taking the full dosage. After day three, my body had acclimated itself to the drugs and my balance was restored. No more dizziness. I felt so much better! Was able to get back on my back and begin cycling again.

Jump to this post

What are dosages for Gabapentin?

REPLY
@molly7234

Could you tell me your current dosages for Gabapentin?
I was on 300mg bedtime

Jump to this post

I take 800mg 3x a day, spaced roughly at 10pm, 8 am, 3pm. (It works for me to allow more time between night/morning doses and a little shorter time between day doses so I can be at peak performance when I need it a little more - when I’m awake, active & exerting myself, and possibly affected by unavoidable temperature changes outside or in air conditioned places). I started 7 years ago at 100mg and it took about 6 months to find that my 800 mg dose gave me the most constant and consistent pain relief. If I miss my late afternoon dose, my body almost always lets me know within 2-3 hours as internal leg nerve pain will start to surface. It helps a lot with the uncomfortable cold & heat my hands/feet can have; it helps a lot with tingling too, but does not help me with numbness. I know most folks take a lot less and works for the comfort level they need.

REPLY
@molly7234

Could you tell me your current dosages for Gabapentin?
I was on 300mg bedtime

Jump to this post

Taking 600 twice a day. Has not helped PN

REPLY
@dbeshears1

I have a Neurologist I “check in” with. I moved within several states over the past 7 years, so it seems while we start out with 4 month visit intervals, it tends to get stretched to 6-12 months between visits after. Since I’m idiopathic and it’s believed that all meaningful (negative) diagnostics have been done, my Neurologist is just a check-in on any changes to see if my Gabapentin is still my best defense, and he has the ability to do EMG’s if needed to review.
I find my PCP is my best friend in helping me along with Neurological care while managing my overall health program. They can also refill my Gabapentin if needed and offers ideas on what I might discuss with my Neurologist on my next visit. My current PCP is actually taking ownership of getting me lined up for Neuro genetic testing, something no Neurologist has ever offered or suggested for me. Since I see her more often, she seems more in tune to my goal of staying on my feet safely and doing whatever I can, if possible, to not regress. My PCPs, not my Neurologists, have coordinated physical therapy and podiatrist referrals, and even acupuncture when one asked if I wanted to try it for my Neuropathy.
I think it’s important for me to have a Neurologist, but I find in my experiences that they desire to be diagnostic, and in my case have run out of ideas, so I’ve had diminishing returns with them over my 7 years with PN. But my PCP’s have offered the therapeutic assistance in dealing with what the Neurologist diagnosed, and keeping all parts of my body working together so I can have the most optimal life. That’s what I’ve accepted as working for me!

Jump to this post

Thanks for a detailed answer. Makes sense. Just surprised that mine hasn’t had me see a neurologist to confirm diagnosis. I will ask for a referral.

REPLY
@domiha

I see my Primary Care doc and he has checked vitamin/minteral levels for me. He made a referral to a neurologist, but after repeated contacts, they never called me back. So I found a good podiatrist, and she prescribed Metanx for me, and she just did a skin biopsy and has referred me to a nerve study lab to have an EMG. So, in my case, the podiatrist has actually been a great help. My spine surgery last year (laminectomy) was done by an ortho spine specialist, so not a neurologist. He prescribed Lyrica to try and help with the neuropathy, but that didn't help and helped me gain 25 pounds, so I'm no longer taking that. He is also the one who sent me to PT, and I am continuing to go six months out, but less often per month than I did in the beginning. Hope some of this may help. Best wishes! Mike

Jump to this post

Yes. I want to get my B12 level checked

REPLY
@daisy22

I will go to my primary care. According to the internet, there's not much the medical community can do for this, so why see a specialist?

Jump to this post

I see specialists for severe allergies, a bum ankle and I have found them very helpful. Also my PCP is overwhelmed. I also have a natural curiosity to really dig in and research my own health.

REPLY
@harryl

Neurologist because 4 years ago that is where my PCP sent me. I had tons of bloodwork and a nerve conduction test from a different specialist.

Jump to this post

Did you learn information you found valuable from the nerve conduction test?

REPLY

I got my diagnosis from a Neurologist who I see about every 4 months so that she can monitor my progression. My Primary care doc prescribes most of my med needs and my pain specialist has helped with insertion of a Spinal Cord Stimulator and shots to my spine to block pain. All together, this configuration is working well for me.

REPLY
@dmoreci

Did you learn information you found valuable from the nerve conduction test?

Jump to this post

I did not. In Epic MyChart it said demyelination. No further discussions about it. One of these days I should ask my neurologist about it. Currently on gabapentin 400mg 5 times/day and 2 20mg Amitriptyline at bedtime. Keeps pain tolerable.

REPLY
@minfromtexas

I got my diagnosis from a Neurologist who I see about every 4 months so that she can monitor my progression. My Primary care doc prescribes most of my med needs and my pain specialist has helped with insertion of a Spinal Cord Stimulator and shots to my spine to block pain. All together, this configuration is working well for me.

Jump to this post

In 2 days I am scheduled for the "test" Spinal cord stimulator. Wondering why you also needed shots for blocking pain. Does the stimulator itself not block the majority of pain? Also, are you also taking Gabapentin?

REPLY
Please sign in or register to post a reply.