1. < Neuropathy

Undiagnosed with an exact cause, but have PN

Posted by frankie7 @frankie7, Jun 25, 2021

Hello everyone!

Hope you are all feeling better. I am grateful for this group and hope someone can answer my question about more vs less gabapentin?

I have PN, but my doctors do not know why yet. I had the blood work, MRI, X-rays and have been evaluated by a neurosurgeon. All the extensive tests came back normal, except for the usual degenerative disc disease and normal ageing. I have nerve studies starting in mid-July from my neurologist, who won't let me ask questions until the studies are done. Nice guy :>(

My physiatrist today gave me a shot in the sacro-iliac joint for my back pain because he says I have a combination of lumbar radiculopathy and PN. Does anyone on this site have both?

He prescribed 300 gabapentin 3x a day, which I've been taking for a few weeks. But I had to increase to 600 3x recently because of the pain in my feet and legs and hands, but I still have pain. He said I may want to go down to the original dose of 300 3x a day. But he wouldn't say why. I asked my pharmacist who said "less is more." Does gabapentin have more side effects at the dose? Is that why?

Any response will be appreciated. I am intimidated by both my doctors, even though I've been using the physiatrist for 6 years now. I am a good patient and respectful to both doctors but feel complete neglected and have nowhere to turn.

My feeling is, my PN comes from the second Pfizer vaccine shot. My PN started a few weeks after getting it.

I am sad and want to just give up.

Thanks.

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

ks1960 | @ks1960 | Jun 26, 2021

I am so sorry you are dealing with this. My PN, which appeared just before the lumbar radiculopathy, is caused by compression of the spinal nerve. When the disc herniated, the pain became … intense. I can’t take opioids, and the only thing that really helped was steroids (which I could only take for 2 weeks). During the worst of it, Gabapentin did nothing but make me sleepy, which was not a bad thing since I mostly had to stay in bed.

After trying physical therapy, aqua therapy, acupuncture, rest, and epidural steroid injections, I finally had back surgery to decompress the spine. This resolved 90% of the pain, and about 50% of the numbness.

To a large extent, my goal now is to learn to live with the numbness. I do a lot of exercise focusing on balance, and do regular reflexology on the numb foot. At this point I take Gabapentin several times a week when the foot burns or hurts, use an ice boot, and have amassed a large assortment of orthopedic shoes!! For me, the regimen of vitamins and supplements effective for many people, have not been productive, although I continue high doses of B12.

Do NOT be intimidated by your medical team. Ask them point blank to explain until you clearly understand. Trust me - they are just regular people and honestly when it comes to neuropathy I think they are just trying to hide what they don’t know!!

REPLY
2 replies
frankie7 | @frankie7 | Jun 26, 2021
In reply to @ks1960 "I am so sorry you are dealing with this. My PN, which appeared just before the..." + (show)
@ks1960

I am so sorry you are dealing with this. My PN, which appeared just before the lumbar radiculopathy, is caused by compression of the spinal nerve. When the disc herniated, the pain became … intense. I can’t take opioids, and the only thing that really helped was steroids (which I could only take for 2 weeks). During the worst of it, Gabapentin did nothing but make me sleepy, which was not a bad thing since I mostly had to stay in bed.

After trying physical therapy, aqua therapy, acupuncture, rest, and epidural steroid injections, I finally had back surgery to decompress the spine. This resolved 90% of the pain, and about 50% of the numbness.

To a large extent, my goal now is to learn to live with the numbness. I do a lot of exercise focusing on balance, and do regular reflexology on the numb foot. At this point I take Gabapentin several times a week when the foot burns or hurts, use an ice boot, and have amassed a large assortment of orthopedic shoes!! For me, the regimen of vitamins and supplements effective for many people, have not been productive, although I continue high doses of B12.

Do NOT be intimidated by your medical team. Ask them point blank to explain until you clearly understand. Trust me - they are just regular people and honestly when it comes to neuropathy I think they are just trying to hide what they don’t know!!

Jump to this post

Thank you for responding and for giving me some hope. I am glad your surgery helped you. And thank you for telling me not to be intimidated by the doctors. I do expect too much of them. You are very lucky one of your doctors figured out your problem. How was your spinal compression identified? Was it by MRI or something else? I admire you for learning to live with the numbness and foot pain. I will try the B12 doses. But most of all, I will look for a new team of doctors. Thanks again for writing.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 26, 2021
In reply to @ks1960 "I am so sorry you are dealing with this. My PN, which appeared just before the..." + (show)
@ks1960

I am so sorry you are dealing with this. My PN, which appeared just before the lumbar radiculopathy, is caused by compression of the spinal nerve. When the disc herniated, the pain became … intense. I can’t take opioids, and the only thing that really helped was steroids (which I could only take for 2 weeks). During the worst of it, Gabapentin did nothing but make me sleepy, which was not a bad thing since I mostly had to stay in bed.

After trying physical therapy, aqua therapy, acupuncture, rest, and epidural steroid injections, I finally had back surgery to decompress the spine. This resolved 90% of the pain, and about 50% of the numbness.

To a large extent, my goal now is to learn to live with the numbness. I do a lot of exercise focusing on balance, and do regular reflexology on the numb foot. At this point I take Gabapentin several times a week when the foot burns or hurts, use an ice boot, and have amassed a large assortment of orthopedic shoes!! For me, the regimen of vitamins and supplements effective for many people, have not been productive, although I continue high doses of B12.

Do NOT be intimidated by your medical team. Ask them point blank to explain until you clearly understand. Trust me - they are just regular people and honestly when it comes to neuropathy I think they are just trying to hide what they don’t know!!

Jump to this post

Hello @ks1960, I would like to add my welcome to Connect along with @frankie7 and other members. Thank you for sharing your neuropathy journey. You may want to join in the following discussion and meet other members sharing their journey with neuropathy and what they have experienced.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you mind sharing what you were searching for when you found Connect?

REPLY
1 reply
rdelfin | @rdelfin | Jun 26, 2021

I started to get foot neuropathy a month after surgery for replacement of joint in big toe. I had had a diagnosis of neuropathy because of random pain in legs which disappeared for years. I have had laminectomy and fusion and at 75 I am reluctant to have another awful fusion but I have many pinched nerves.

REPLY
ks1960 | @ks1960 | Jun 26, 2021
In reply to @frankie7 "Thank you for responding and for giving me some hope. I am glad your surgery helped..." + (show)
@frankie7

Thank you for responding and for giving me some hope. I am glad your surgery helped you. And thank you for telling me not to be intimidated by the doctors. I do expect too much of them. You are very lucky one of your doctors figured out your problem. How was your spinal compression identified? Was it by MRI or something else? I admire you for learning to live with the numbness and foot pain. I will try the B12 doses. But most of all, I will look for a new team of doctors. Thanks again for writing.

Jump to this post

Xray and then MRI showed spinal stenosis, bone spurs, herniated discs and arthritis (or as I like to call it, a general spinal sh#t show!! I have had a previous herniated disc, but never experienced neuropathy until this round.

REPLY
ks1960 | @ks1960 | Jun 26, 2021
In reply to @johnbishop "Hello @ks1960, I would like to add my welcome to Connect along with @frankie7 and other..." + (show)
@johnbishop

Hello @ks1960, I would like to add my welcome to Connect along with @frankie7 and other members. Thank you for sharing your neuropathy journey. You may want to join in the following discussion and meet other members sharing their journey with neuropathy and what they have experienced.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you mind sharing what you were searching for when you found Connect?

Jump to this post

I specifically was researching neuropathy (which did not really think was a thing until it happened to me!!!) My neurosurgeon just told me to see a podiatrist.

REPLY
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