Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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@johnbishop, gailfailth here again. Might as well start from the beginning but will try to make it short!!!!!! On the evening of Nov 10th, I went out on my new scoter( 3-wheeled one) to get the mail. I keep the key for the scooter along with the key to the mailbox on lanyard and I have to take the key out of the scooter to reach the mailbox. I saw there was a lot of stuff in the box, so I stood up to be able to put it all in the basket behind my seat. But I apparently put the key back in the ignition, and holding onto the steering yoke for support, I must have hit the accelerator. SCOOTERS DON'T HAVE SAFETYS, AND THE SCOOTER TOOK OFF AND KNOCKED ME DOWN. Fortunately, I had my Western hat on as I used to do sheep herding demo's with my dog.. I landed on my back and I was fully aware that when my head hit the concrete, the brim of the hat resulted in a very soft bounce to my head. Then I saw my right foot up by my right ear and my R knee two feet to my right. I don't remember any pain at that time! I yelled for help, but the cottages here are very soundproof. so I reached for my cell and called for help. When the nurse arrived she sat next to me holding my knee, and a neighbor saw us and put blankets on both of us. I heard her give directions to maintenance to put my scoter back in my garage. When the first ambulance arrived, I heard them call for a second ambulance. Since the driver of the first ambulance not only took me to the hospital but brought me back from the hospital several days later and then to the doctor's office, so we sorta became friends. I asked if I was screaming in pain and he said no, "you were orchestrating what was going on around! you!" He said that when they took the blanket off me, he thought my leg was wrapped around my neck. I heard them call for the second ambulance. Apparently
they called for the fire dept. Some said the iv is in and then I remember arriving at the ER. and later saying I would have surgery the next day, but that didn't happed for another 3 days. I was told my femur was broken. Later the nurse told me my leg was dislocated from my hip, but apparently that returned to the socket as nothing showed in the x-rays. But even now, sometimes I have pain when I sit too long as apparently the tissues in that area were stretched, etc . Back in the nursing home division of my retirement community, they told me they saw notes that I had a wound on the back of my leg, but I had no knowledge of that. Seems the scooter fender gouged out a piece of my leg just below the calf muscle and above the ankle, so it damaged nerves, blood vessels, tendons maybe, etc. I am grateful to the Lord that no infection occurred..I know several people who have had legs amputated due to leg infections.. I can walk with a walker but the first few steps after I had been sitting for any length of time but within a few steps and be fully weight bearing and my gait appears normal, but though I have no pain but it feels like anything but normal. Before the accident I walked indoors with no canes, etc, but outside I used two canes for safety. The plate along side the femur goes inside the prosthetic knee and only at night do I have pain in the knee. Oh yes, it was a spiral fracture going from alongside the knee half up the femur to the hip.. Because the surgeon who did both of my knee replacements I plan see him to get his thoughts on this surgeon's handiwork. The current surgeon says if it still gives me discomfort in a year, he will remove the plate, but I just might let my knee surgeon do that!.

Will later send another Connect, re vertigo apparent solutions, etc,.gailfaith

@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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@gailfaith — OUCH! There goes scooters from my list of things to try. In my younger days I had a Honda 125 cc dirt bike that I took out in the desert when I lived in California but that was enough for me. From the description of the accident it sounds like you were put through the wringer.

John

@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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@johnbishop WIshful thinking when you state" you WERE put thru the wringer".'. I am still going thru the aftermaths and trying my best to be able to walk like a normal human. I still use my scooter, but I make sure the key is no where near where it gets plugged into the "ignition". Wonder why they never put a "safety" on scooters. They do on lawn mowers. I understand you have to be sitting on the seat for it to move anywhere.

OK, change of subject while I am writing to you but I'll leave it up to you to put is in the proper category! ..I was in the nursing home initially from Nov 14 until Jan 18 ( If those dates are off, it is only by a day or two!) On Jan 21. I was sound asleep around 3 AM when I just turned over in the bed and I had my first and severe attack of vertigo. I felt as though the brain was floating untethered within my skull. That woke me up! Never had any vertigo previously. . I went to my neurologist and to my ENT and both just basically put it on the back burned and rescheduled me in another couple of months.. i mentioned it in an email to a friend and she said that she too gets vertigo, but heard that vertigo can be related to a low carb diet. and though they haven 't gone away completely, she is defiantly better. As I am prediabetic , I eat a lo carb diet. No bread, white potatoes, or pasta.. So I added one slice of whole wheat bread and some wheat pretzels per day.. It started to appear to get better. But now that I am back in my cottage and back with my regular PT, (who I have been seeing on a weekly basis since I was at Mayo in Dec,2013 .who happens to have a PT on staff who specializes in treating vertigo. By the time I got an apt I was definitely better and indeed no matter what he did with me, it did not cause any vertigo. That PT never heard about the relationship with vertigo and a lo carb died! It sure is worth a trial if anyone suffers similarly., gailfaith

@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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Thanks @gailfaith I don't have any experience or knowledge when it comes to vertigo. I did some searching and found the following article on the National Institutes of Health site.

Is There a Possible Association between Dietary Habits and Benign Paroxysmal Positional Vertigo in the Elderly? The Importance of Diet and Counseling — https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4593901/

Also found Low Carb Diet Side Effects on a Ketogenic Diet Resource site here which lists dizzyness as one of the side affects:
https://www.ketogenic-diet-resource.com/low-carb-diet-side-effects.html

John

@suzylulu

Coleen and John, you are appreciated for your efforts in guiding and answering our questions.

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I recently had outpatient surgery for sciatica in my filth leg. It's been 3 mos my condition has worsened. My doctor has scheduled another MRI & NERVE DAMAGE TEST
DID HE SCREW UP cause now I cn hardly walk. Pls reply asap pls. JOANN

Liked by axel

@suzylulu

Coleen and John, you are appreciated for your efforts in guiding and answering our questions.

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Hello Joann @jk1234 — Welcome to Connect. I don't have any medical training or background. I don't think any of us here on Connect can tell you whether your recent outpatient surgery for sciatica is the reason you can hardly walk. It's a good question but I would talk with your doctor and see what they say.

Did your doctor give you any information about recovery time from the outpatient surgery? Or physical therapy that would be helpful.

I has small fiber peripheral neuropathy and there are times when I can barely walk, especially when I just get up or have been sitting or standing for a period of time. What helps me are a few exercises and understanding that I need to be a little cautious taking those first few sometimes painful steps.

John

@suzylulu

Coleen and John, you are appreciated for your efforts in guiding and answering our questions.

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Joann @jk1234, I encourage you to ask your questions in this discussion group specifically talking about sciatica.
– Sciatica pain https://connect.mayoclinic.org/discussion/sciatica-pain/

Thanks you. I've had peripheral neuropathy for so long it is almost like breathing.

@wellness3070

Anxious to discuss peripheral leg neuropathy and treatments.

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Im suffering from Neurolgical problem. When I work hard, standing for even shorter time or hanging my legs I feel very bad pain in my left leg. Not able to bear the pain in legs and centre two fingers in left leg. Im using Leg sox during my work and the pain has been somewhat contgrolled. But can't escape from bad pain.

@wellness3070

Anxious to discuss peripheral leg neuropathy and treatments.

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Both Ulnar neuropathy and peripheral neuropathy makes our life tough. I was diagnised with Ulnar.

@kevinking

Glad to see this group. I have idiopathic sensorimotor axonal polyneuropathy, which means, in my case, that both my legs are weak and sometimes my feet hurt, but there is no known cause of the neuropathy and no known cure.
Sometimes I experience the most foot pain lying in bed. I have been offered gabapentin, but in my experience that drug was not helpful.
I also understand that alcohol may exacerbate neuropathy, so I stoped all alcohol intake; however, I haven’t seen any improvement yet.
I had a laminectomy at L4-L5. That had the possibility of easing the neuropathy, but it didn’t.
What’s next? Don’t know.
Kevin

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Take Nerve conduction test.

Hi Colleen. My Dad was just diagnosed with axonal sensitive motor polyneuropathy. He is 78 years old and has always been in great shape. He works out at a gym at least 3 times/week. He experienced sudden fatigue two weeks ago and pain in both legs (mostly in his calfs). He became so restless and did not sleep for an entire week. Doctors told him it was a virus and told us to wait it out. We took him to the emergency department 3 times in one week – once by ambulance and finally they admitted him. He has been in hospital for a week now and blood tests have revealed this diagnosis. At this point, he cannot stand. He says he cannot feel the floor. He can move his legs while lying in bed (up and down) and can move his ankles in a circular motion. His strength, however, has significantly declined. He is on his 3rd of 5 treatments of IVIG treatment. His physician told him today that if it works, she does not expect to see improvement for one to two weeks. She also said that if it does not work, there is no other treatment option. Can you or anyone else offer anything new on this condition? Thank you so much!

@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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Hi Gailfaith …. Colleen gave me your post to read, as I also have had a nasty fall almost now 3 weeks ago. But, yours was far worse than mine …. I can't imagine the pain you are enduring. The management here takes care of outside maintenance very poorly and I fell due to a broken walkway from my building with a metal piece, about 5" x 2" protruding from it. Well, my heel got caught on the metal and I flew …. I hit the concrete pad that holds the electrical system on my left side,my head bounced on the concrete and up and hit the metal strips on the metal box. I've had trouble adjusting to this move anyhow (from MD to VA), and I think this really opened the water works. I just laid there and cried in pain. I did not want to move, and I knew I had been knocked out briefly. Now this is a low income apartment complex, and yet not one person came to help me. I just wanted to sleep. I finally rolled off the concrete pad, and managed to get up using my right arm and leg. I came in the house, upset, hurting, dizzy, and nauseus. I laid down and fell asleep which I know is totally wrong with a possible concussion, but I was not even thinking concussion. The next day, my whole body hurt, especially the left side on which I landed …. I slept, drank water, went to the bathroom, and that was it. Finally the following day I went to the doctor, was immediately diagnosed with a concussion, and severe bone and soft tissue injury. They x-rayed my whole left side and my back and it didn't appear that anything was broken, but they were going to send me for an MRI which would find hairline fractures, but they also told me not to drive. Hmmmmm ….. so I was to get there how? I saw the doctor 2 more times, taking a cab, was put on muscle relaxers (which were worthless). My whole left side and head just ached. I'm finally doing better, but am wearing a brace on my elbow, still hurt but it's slowly getting less, and continue to have side effects from the concussion. The doctor told me that internal soft tissue injury can take a long while to totally heal and that I just have to tough it out, along with the effects of the concussion.
So, here we both are, but I keep thinking ….. at least I'm alive. I do use a cane. You take care of yourself friend.
abby

Liked by barbarn

Mentor John suggested I post here. I've been dealing with Anti-MAG neuropathy for many years, but am now wondering if anyone has had any experience with stem cell therapy for neuropathy….curious if Mayo is using that therapy for neuro issues.

@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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Hello @gailfaith – I'm sure you have already checked out any meds prescribed to you. I have been dealing with vertigo for a couple years, and on the prescriptions I take, the labels on the bottles clearly read "may cause dizziness"!!! That is on Gabapentin, Tramadol and Requip bottles, which I take all 3, every day, for neuropathy, restless leg and pain. I've discussed the issue with my dr and I'm trying to get off those meds, but it's nearly impossible. Good luck to you – I know it's so good just to be back in your own cottage – and am amazed that you had the courage to get back on your scooter!!

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