Living with Neuropathy - Welcome to the group

Hi,
My name y it a Marg and I’ve been diognosed with orthostatic tremors. I can’t stand for ant length if time and if I try to do too much my legs feel like I’ve just completed a 10 km run. I feel unbalanced in open spaces. I’m much better if someone is walking on my right side or even a building etc. I’ve researched a bit and as far as I can see everyone has different symptoms. Walking across roads or car parks us a nightmare. Does anyone else have these symptoms and if so how do you deal with it?

Hi @granma261253 ,
The Brain & Nervous System group may be of more help. There is this discussion among others: https://connect.mayoclinic.org/discussion/primary-orthostatic-tremor/.

My name is Michael M. I was diagnosed with peripheral neuropathy. I have it in my feet. I experience pain in my toes and overall numbness. Occasionally I like to have a glass of wine or a bourbon drink. Alcohol seems to make the neuropathy worse. Has anyone experienced this?

Hi Michael @mikeamazur, Welcome to Connect. I used to love a glass of wine or a few beers once in awhile but after I was diagnosed with neuropathy and found out that alcohol can cause neuropathy I just stopped drinking it all together. I don't think an occasional drink has much effect on most people with neuropathy. On the other hand, if you have neuropathy and you notice that it seems to be worse after having a drink that would ring an alarm bell for me and I would stop drinking. There are a few sites to learn more about neuropathy and what treatments may help provide relief for the symptoms. These are two of the better ones.

--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.

There are a few discussions that you might find helpful on neuropathy and alcohol:
--- Small fiber peripheral neuropathy and alcohol: https://connect.mayoclinic.org/discussion/small-fiber-peripheral-neuropathy-and-alcohol/
--- moderate use of alcohol: https://connect.mayoclinic.org/discussion/moderate-use-of-alcohol/
--- Alcohol helps with my pain: Does it make neuropathy worse?: https://connect.mayoclinic.org/discussion/alcohol-2/.

Do you mind sharing a little more about your diagnosis and how long you have had neuropathy?

I hear what your saying about the feet on fire. Have found some relief with Bio-Freeze, a green gel that you smear on the bottom of feet and then rub it good on bottom of foot thick and then massage it in all over feet. Smells like menthol or Absorbine Jr. Amazon has it. I apply it at nite as I go to bed. Hope it helps you. Bet it will‼️

About 6 years ago, (73 years old), I began to notice that I had pain and tingling. It was everywhere in my body. Scalp, ear lobes, legs, feet, penis, etc.,. It lasted 10 to 30 seconds per episode and the episodes were at least every half hour. I went to a neurologist at U of Michigan . He told me I had small fiber neuropathy. No cure for it and if it gets worse I could take Gabapentin. I actually took gabapentin for a short while but the side effects were worse than the pain and tingling so I don’t take it. I am borderline diabetic and the neurologist said that could be the cause. He really didn’t know. I decided to stop intake of sugar. No soda pop, cakes, cookies, ice cream, etc.,. Within two years the small fiber neuropathy was 90% gone. I was so happy. I still have a small amount that occasionally manifests itself in my eyebrows. However I live with it. I have peripheral neuropathy in my feet. It is very different than the small fiber neuropathy. It started about the same time and is getting worse. Both feet are about 50% numb and I have two toes one on each foot that are painful. They hurt a lot especially in the evening when I sit down. They don’t hurt when I walk or am active. They are getting more painful at night. I stopped drinking alcohol and it appears that it helps but it is hard to quantify.
Michael

I have been diagnose with small fiber neuropathy. I have to tingling in my legs plus when I raise my arms they really hurt and make my stomach feel weird. I also have ringing in my ear and a burning tongue. My leg’s really hurt when I walk up stairs. My legs don’t usually hurt when I walk on level ground. I have tried a lot of different medicine that haven’t help. I feel lousy when I get up in the morning but I improve as the days go on. I’m 78 and I feel like this might have started fairly soon after I had hemorrhoid surgery.

I am puzzled as to why no physicians have labeled my symptoms as nerve damage from my multiple herniated discs and spinal fusion at C5-6. I had been in a rear end collision, which caused me to have a concussion, whiplash, and cervical, thoracic, and lumbar disc damage. Not one doctor suggested my symptoms of neuropathy are from that. I have been undergoing testing and everything comes out normal, yet my symptoms exist. I am having a skin biopsy to confirm the doctor's suspicion of SFN.
I have never heard of B12 treatments. Can you tell me more about this? My doctors have only prescribed Gabapentin and are not doing anything more until I have a clear diagnosis, but the suspicion is SFN and Fibromyalgia.

I'm NOT a doctor. So, I can do nothing but relate my experience. But, I've seen recent ads for Sanexas treatment on local television. It is advertised as being for Peripheral Neuropathy. The conduction points are on the foot.
I had them put the electrodes on my lower back, instead. This was approved by the Nurse Practitioner at the Sanexas location. Dry Needling was also done on the same days.
It sounds like your problem is different from mine.
The Neurologist told me that it sounded like I might have a combination of peripheral neuropathy and that nerve problems from L3-4 "could be" part of the problem. The closest thing to a diagnosis is idiopathic peripheral neuropathy. In other words, they don't know what is wrong, just like your case and the cases of many of us.
It is important to note that Sanexas and needling did not help my foot drop or limb weakness. It did help the needle-like itching in my feet.
Following an approach where the patient should participate (within reason) in their treatment, I think I would ask more questions. It seems like you are on the right path. You didn't say whether your doctor was a Neurologist. Were your tests blood work that can rule out a lot of neuropathy causes? I paid for several panels, but they were inconclusive. Many docs will not even test, simply because there is usually no cure. They treat the signs and symptoms.
Have you tried massaging trouble areas to see if that helps? That may tell you a lot.
I feel your anxiety, and I'm sorry I don't have a better answer for you.
Best Wishes and Health!

Thank you for your response. I have a neurosurgeon who performed my C5-6 fusion and discetemy. He feels that all the symptoms are not related to the spine injuries or surgery. I also have a neurologist and rheumatologist who are treating me for the symptoms. The neurologist feels it is autoimmune related and the rheumatologist feels that it is neurologically related. I'm like a ping pong ball right now. I have had three series of extensive blood work done and also two EMGs and four MRIs. The next step is the skin biopsy. Can you tell me more about the B12 treatments? I take B12 supplements and eat a diet rich in anti inflammatory foods to help my symptoms as much as possible. I also go to physical therapy and do tai chi at home. I will try any alternative treatments that I can find available. I will be going to the cleveland clinic next month. The mayo clinic is much farther away, but I will be inquiring about going there as well, once I am able. I am 45 years old and have two young children so this is quite a challenge for my family.
Thank you for any advice you have to offer.

Kat