Is loss of balance your primary complaint with neuropathy ?

Hi mrmacabre Once they find out where nerve damage, then what? How would treatment be different than what I am doing now? I guess I just dont understand and in my opinion neither do neurologists. I am now taken 300 mg a day of the gabapentin which does help with the burning, R Alpha Lipoic Acid, Benfotiamine, AcetylL L Carnitine, Biotine, manesium, turmeric. I exercise 3-4 times a week and swim everyday in the summer even though I live in central Florida, pool temp is 70 degrees too cold for me. Anyway, I tell myself why go throughthat horrifying EMG and treatment will be the same. Eight yrs ago was enough for me, I can still remember the pain.Now,my husband had EMG with no pain, he said it was like a bee sting. As with neuropathy we are all different with the EMG. Thank You for responding ,you are brave WOW 3 EMGs.

Yes. It is a journey of research, trial and error, and hope. And. Prayer 🙏🏻 Numbness and balance problems should, at the very least, be referred to physical therapy for giving us the best chance for walking safely. I plan to get a referral to a podiatrist after I check reviews. Maybe push for physical therapy too.
I started using my wood cane, in the house. It does make me feel a bit more secure. And, I no longer wear ‘hospital socks’ with treads, because I always feel like I am sliding sideways. I have been wearing a pair of Xero ‘sunrise model’ shoes in the house and I feel more secure, although my gait is awkward, to say the least. Their actual slipper is out of stock. I wear them without socks, so feet are a bit cool, but that’s fine. Stairs are not easy, but slowly, with the shoes, I do it. And, I still manage to carry my 7 lb Chihuahua up and down. She is 16 years old. I still use Bengay on my feet and ankles at night, not for pain, but to mask the weird sensations. Handbar attached to side of tub for safety in and out.
So far my Hoka Clifton 9 shoes are my choice for when I leave the house. And, I am taking my cane when I next go out. I have another pair of Xero shoes coming, for outside of the house. I’ll update once they are given a decent test.
Yes. Keep your neuro appointment. Learn as much as you can. Good luck. ❤️

Hi, I have been to PT 3 times, yes it helps IF you continue exercises at home, which I do. It helps to make you feel stronger and more secure in walking. Balance issues do not go away. I try to always keep one hand free of carrying anything and try to walk near a stable structure, wall chair, table whatever. If I just put my pinky finger on stable object I am balanced again, this is crazy. I wear hokas bondi, with PowerStep insoles, which have helped immensely. They have many different styles, you can email them and ask questions wonderful company. My podiatrist recommended them, purchase on Amazon. Your doggies sounds amazing 16 wow. I feel I learn more on Mayo Connect than any neurologist, my opinion, they deal with so many brain disorders that neropathy is last on their list. Science and medication is forever changing, I am sure it is hard for neurologists to keep up. Best Wishes to all

Please check out the foundation for peripheral neuropathy website. They have a lot of information but better than that they give you a place to select your state name and then a list of neurologists that specialize in peripheral neuropathy only. Also the names of your local support groups etc. I just discovered it last week so I haven't had a chance to investigate but it is comforting to know that the medical field does acknowledge this condition and that there are doctors out there who are well versed on it. Have hope!

No matter what you have, there are thousands of researchers working on it. Wish them endless epiphanies.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10561699/

@scain - How true. The support groups are very helpful many of which conduct meetings via zoom. The Foundation does suggest many and you can participate in one even though you may not be in the same state and be hundreds of miles away. Some have zoom meetings in evenings and weekends.

I have similar balance and foot and leg numbness following chemo. Also was told that a long course of Vancomycin when I had C Diff during chemo could do some damage to the balance center in your ears. I am trying everything to try to deal with it: exercise, red light, electrical stimulation. I think anastrozole may not be helping either. Same experience with neurologists. Healthy diet, B vitamins, and low sugar intake are important.
Let you know if anything helps.

SFN? ALA? Acronyms are very hard for newbies.

@pollypolly
SNL-small fiber neuropathy
ALA- Alpha Lipoic Acid
R-ALA is preferred

Sorry to hear of your travails. I share some of your symptoms and can also relate to your experience with the poorly informed neurologist. Alpha lipoic acid hasn't been very useful in PN when taken orally but has shown some real benefits when taken intramuscularly once or twice a week. B12 is also much more effective via injection. Vibration therapy helps me to some extent as does walking as much as possible. Some other things you might look into: prescription high dose capsaicin via Qutenza which, though approved primarily for painful neuropathy in the diabetic foot has shown some, post-approval--nerve neogenesis, indicating it may actually be able to modify the course of the disease to some extent rather than just treat symptoms. The Qutenza patch is very different from lower dose over the counter capsaicin preparations which have little to no benefit and, though lower dose, inflict more pain. Winsantor is in phase 3 clinical trials with a repurposed drug that could become the first FDA drug approved specifically for PN disease modification. Go to the Winsantor website for more information and sign up for their FDA approved "compassionate use" program if you are interested in that. This will require payment for the actual cost of the experimental drug, if you opt into the program, as is standard in these compassionate use scenarios Winsantor has a very reputable group of researchers, and, for purposes of disclosure, I have no connection to the company, financial or otherwise but am interested in trying their drug as soon as possible. The last word I received is that they hope to launch this program soon.