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

Hello, dmoreci (@dmoreci)

I have two neurologists. One is a "regular" neurologist, and his office is adjacent to the local hospital. Most of my interaction, however, is with this doctor's MA. The other neurologist, whose office is out in the suburbs, specializes in physical rehabilitation; in other words, he's a physiatrist. So, two neurologists are dealing with my peripheral neuropathy. Since the two offices are miles apart, I do what I can to keep each neurologist informed of what the other one tells me.

Cheers!
Ray (@ray666)

Thank you. That makes sense to me. Will ask for a referral.

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!

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.

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

Hello, Mike

I believe that's been the experience of many of us. We patch together a "doctor team" from an assortment of specialties. In a sense, that's what I've done, too––even though when asked (to keep things simple), I'll say I've two neurologists.

But when it comes to my overall PN care, I rely on other doctors, too, my PCP primarily.

A few months ago, I also consulted with my podiatrist; I wondered if adjusting my orthotics might help with my balance. (He thought no, that my orthotics were doing all that could be expected of them.)

I also have an orthopedist I like. I haven't been to him in while, but he, too, is fully aware of my PN issues.

Calling them my "doctor team"––my one neurologist (the one who is a physiatrist)––when I asked him if I could think of him as my No. 1 go-to doctor, he replied, "I'll be happy to play quarterback." That made me smile!

Ray (@ray666)

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?

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.

Since I was diagnosed with sfpn or CIDP, I've seen neurologists, pain specialists, a pain therapist and my PCP. Each of them has exhausted their list of treatment options, with limited success. I have a spinal cord stimulator that helps (implanted in 2017), have IVig infusions every 4 weeks, and right now I'm between pain meds. I stopped the latest one because it was having no effect, and I'm going to try low dose Naltrexone before I go back to MS contin, which is the only medication that has been effective in reducing my neuropathy pain in my feet.

If any of my doctors prescribe something for neuropathy, I always run it by my neurologist. Most of my prescriptions are handled by my PCP - once the specialist is satisfied that what they have prescribed is at a maintenance dosage, they hand it off to my PCP.

Treating any neuropathy is far from a precise science. We keep hoping that a cure will be discovered. Whoever comes up with one will be a wealthy person, dearly loved by the millions of us who live with pn pain.

Jim

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