Living with Neuropathy - Welcome to the group

Good evening @flojean60 and thank you for your first post. I noticed that you have been with us for a while before posting. We are pretty harmless, just a group of patients, former patients, caregivers and providers who may have had some experiences similar to yours. Sometimes it can be very helpful to learn what others have felt and even dealt with regarding medications and other treatments.

You mention that you are experiencing moments of imbalance. When is this most likely to occur? Does it feel like your leg buckles or gives way? Are other parts of your body numb and unstable? Does this happen as you are walking? Getting out of a vehicle or up from a chair?

Neuropathy can come in many different forms. Do you have a diagnosis from a clinician? How was it derived?

My challenge has been the numbness in my feet which, by the way, also affects my ability to drive a vehicle. Sometimes I get a bit woozy and unsteady when I get up from a seated position. I truly don’t know if that is neuropathy or medication.

How long have you had neuropathy? What other symptoms are you having? Any itching? Just wondered, because neuropathic itch is one of my daily if not hourly challenges. Please share as you are comfortable.

What medications are you currently taking?
May you be free of suffering and the causes of suffering.
Chris

A real nerve biopsy or the sfn punch biopsy ?two totally dif things

I am still seeing doctors. No real diagnosis yet. I had more lab work done. They took 10 tubes of blood and three weeks to process. I had the Paraneoplastic AB eval w/reflex and the Sensory Motor Neuropathy Complete AB Panel. The only thing that showed up low was the immunoglobulin M it is 50-300 and mine was low at 39. So I read up on this and the way I understand it M is the first to stop infections. I definitely will have questions for the Dr. When I was younger at 12 and up I was sick a lot. First it was the tonsils because I was having strep throat constantly. Tonsils out no more sickness. Till I went to Texas and was having frequent sinus infections. Then eventually when I moved to Florida I lived under oak and pine trees and was sick all the time. When we built our house, no trees close to the house and I have only had a few times when I was sick. Could count on my one hand.
I will be seeing a Hematologist next. Hopefully it won't take long for an appointment but I know it can. Anybody out there have a low M and what did they do about it? I have been getting the pin prick and ant bite feeling pains all over and in the eyes again. I have some sort of pain that is on the top of my hand that goes down from the wrist to between the ring and little finger. I am sweating a lot at night and having low grade fevers of 99.1-99.6. I live in a cool house and it starts at night usually and it drips down my neck. The other thing I noticed is I will have some jerk movements in my hands mostly if I am holding something. It is not constant it just happens. Has anyone had anything like that? I have small nerve fiber non length dependent. I woke up in march in the morning and had pin prick and ant bite feelings all over including the eyes. It was full blown. Don't know yet whether it is idiopathic or not yet.

Hi I am Jim,
I am living in Arkansas and I have diabettes for 4 years I am managing it pretty well now but in the past I was not and I was getting high blood sugar levels 500, 600. I was in the hostpital and had a 718 blood sugar level very great full I did not die.
But I did get diagnosed diabettes neuropathy. I have it in my feet.
And my muscles all over my body I take 1200 mg gabapentin 3 times a day and it helps but I am still in pain when I move
I like to remain still and listen to ambient music and meditate that helps.
I do have a question do any of you have muscle pain from their nueropathy I sometimes think my muscle pain could be caused by some other illness ? Thanks for reading and any replays are welcome.

Hello @paradisejim, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. There is another discussion you may want to read through to meet other members discussing diabetic neuropathy - Diabetic Neuropathy progressing?: https://connect.mayoclinic.org/discussion/diabetic-neuropathy-progressing/

I have idiopathic small fiber neuropathy and posted my story in the following discussion along with the neuropathy stories of other members. This discussion might also be helpful to learn what others have shared helps them.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

I think music and meditation helps a lot of us and provides needed relief. I've had cramps in my leg and arm muscles but I'm not sure they are related to my neuropathy. I think for me it happens a lot when I don't drink enough water.

The Foundation for Peripheral Neuropathy has some good information on alternative methods that may offer some help for your neuropathy - https://www.foundationforpn.org/

Have you tried any alternative or integrative therapies?

Hi I have had neuropathy in my feet since my tkr 10 months apart in 2016 and 2017. I have had 3 decompression surgeries on my tarsal tunnel nerve to not avail. I believe it is my gait since knee replacements. No matter how many times they decompress nerves I walk and compress them again. I do not have diabetes and blood work during all this has been good. Vitamin B counts are good. I believe it is simply a nerve I lean on when I walk. I have orthotics and very flat over pronated feet. I am at wits end as to what type of dr to see now. Seems podiatrists don’t want much to do with nerves..I am perfectly healthy but this is very debilitating and ruining my life. Any suggestions???

@kp6350 An abnormal gait sounds like a possibility. I think an orthopedics specialist or neurologist might be a good choice along with a podiatrist which you mentioned already seeing? Here's some information I found that mentions issues with gaits.

Abnormal gait: Types, causes, and diagnosis: https://www.medicalnewstoday.com/articles/320481

I thought I read a post in another discussion about someone having trouble with their gait after a knee or hip replacement and it was causing pain but I was not able to find the post. @sueinmn may have seen it but I'm not sure.

Maybe you don't need a new doctor, but the right therapist?
I can't put my fingers on the post right now, so I'll repeat. After a long-time imbalance in the body, we gradually begin to walk differently. After years of limping on bad hips, followed by more limping due to failed implants, I had terrible back pain and one of the new hips always hurt.
My very diligent ortho determined that hips and back were not the problem, my uneven walking was. He referred my to a PT clinic that specializes in getting people walking after severe injury, stroke or amputation.
After analyzing my walk, I was put through a course of gait training, similar to what is described in this article https://www.verywellhealth.com/gait-training-in-physical-therapy-5069884
Therapy was twice a week to begin, with a series of exercises to be done twice daily at home. At first we did much of it in a therapeutic pool, because walking was so hard. After 2 months I graduated to a home and pool exercise program for a total of 6 months. It was a LOT of work, but 10 years later, I'm still doing pretty well and I only limp when my knees hurt. Not everyone will have such good results, but it is worth a try to get your life back.

Let me know what your doc thinks of the idea.
Sue

Hi! My name is Libby and my husband is suffering from peripheral neuropathy mainly in his lower legs and feet. He doesn't have an accurate diagnosis. The doctors at UK Medical Center thought maybe it was CIDP but are not sure because the EMG test did not confer.
Anyway, he can not stand to sit for more than a few minutes before the pain in his behind is terrible. We have a 12 hour drive to Mayo in October. He will be lying down in a transport vehicle most of that time. Can anyone give me an idea what I could do to lessen the pain when sitting. He has lost most of his core strength. We are working on that before we come to Mayo, but not much help so far.

Hello @libbye, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I know it must also be difficult for you to know your husband is in so much pain and not know how to help him. Has your husband tried something like a donut pillow with a hole in the center (orthopedic donut cushion) to see if that helps with pain when sitting?