Sudden onset neuropathy and scared

Hello @formerfisherman, Welcome to Connect. It can be scary to read about all the scenarios and symptoms that can go along with neuropathy. My neuropathy was not a sudden onset but I had the same worries after I was diagnosed 20+ years after my first symptoms showed up. I think the best thing you can do is make a list of your symptoms and the questions that are running through your mind and take them with you when you see your doctor. You might want to take a look at this website that has some tools and tips you can use to talk to your doctor Friday --- https://patientrevolution.org/visit-tools. The advantage of being prepared for your appointment will be helpful for you and the doctor. Hopefully you can get all your questions answered.

There are also two good sites I use that have reliable information on neuropathy that might be useful before and after your appointment.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Can you let me know how your appointment goes Friday?

Yes I will let you know how it goes, and I appreciate the links you have provided.

My issues also came out of nowhere. I first thought it could be cancer in the spine. I kept reading and wondering what it could be. Scary! I still don’t know. I have done every test. I was put on zymbalta. Not sure if it has helped. I also started eating better, no gluten, no alcohol, vitamins.

It is much better now. I can sleep through the night. Do research and No you will not die from it. Hopefully you will find answers and relief. Lars.

Wondering how you are both doing? I was diagnosed with PN in May and it is getting worse. As I try to exercise (walking and cycling) it seems to get worse right afterward. This doesn’t make sense to me since these are highly recommended exercises for PN. My left foot is nearly all numb, the right is following but not as bad. The whole prospect of a disease like this is terrifying and all consuming and I’m only a short time with it. It’s helpful to check in with this group and comforting to hear others’ stories especially those living with it longer than me. Hope to hear your thoughts.

I had a similar experience. Since the start, I've learned that there are a number of factors that can be the origin of the problem. In my case, I did not have any back pain when my PN starated. However, lately my back has shown itself to be the root of the problem. Now, I'm working with some orthopedic surgeons hoping to get some back relief which in turn might help with my PN. Have your doctor do an MRI of your back to assess your back and either confirm or eliminate your back as a potential source. Not all back problems have pain. Good luck.

I had a sudden onset, literally overnight. First my right foot then left. It felt like I was stepping on pebbles and then I couldn’t feel them. Had to give up driving and walking my dog. Now I can barely walk around my house and need my Walker or I will fall. It took months to get an appointment with a neurologist who diagnosed length dependent peripheral neuropathy. She referred me to the local spine clinic. I had a consultation with the neurosurgeon’s assistant who was ready to sign me up for surgery. I was not ready to take that step and nowhere did I see information that suggested neuropathy could be cured by surgery. As my condition has continued to deteriorate and involve the proper functioning of my digestive system I am going ahead with surgery. My neurosurgeon thinks that my spinal stenosis and spondiliothesis(spelling?) are causing my neuropathy. We shall see, my sciatica at least may be helped.

Hi Louise,
You don't happen to have a copy of the MRI narrative report do you? I ask because before you do surgery you might want to know the degree of spinal stenosis. When the spinal cord is compressed it is usually referenced in terms of the thecal sac. That is the membrane surrounding the spinal cord. Is the stenosis in your lumbar region I assume? You can also have foraminal narrowing. The foramin are the ends of the spine-the ones that stick our from the main body of the spine. You can get symptoms when they have severe narrowing as well. Spondylosis is a broad term to reference the age-related changes of the spine and is called degenerative disc disease and osteoarthritis. But spondylolisthesis is a whole other thing. That causes discs to fall under another. I just had surgery for the same thing but in my cervical spine. I attached a link that describes the condition. I'm very happy to hear there is an answer for you. How soon is your surgery? https://orthoinfo.aaos.org/en/diseases--conditions/spondylolysis-and-spondylolisthesis

The usual causes (alcohol and diabetes) usually come on slowly. The speed of your progression suggests something spinal.

Mine progressed quickly in a two week period in March from very minor numbness in sole of feet to some mild numbness in hands and knees and feet to ankles. I had no idea if it would stop so it was terrifying. However it did stop. I now think it was caused by an existing mild neuropathy that was exacerbated by prolonged stress, overwork and two bouts of Covid I had had at the end of last year which I think weakened my immune system. Since then I think I have seen some minor improvement. But it takes many months.

I suggest you eat better, cut out the refined sugars, get lots of rest, avoid stress and try to be positive. These things can reverse, even more so if they come on quickly.

I’m in a similar mindset, just two months after diagnosis and it has really escalated in my feet. I try to exercise, walking and cycling and have more numbness in both feet the following day. You cannot die from PN but no doubt it can be a living hell. You worry how bad it could get, I have watched my left foot go almost completely numb with the right not far behind. I am in PT and retain high function, do exercises every day, all the usual neuropathy workouts, those give me more confidence as long as I can do them. For me, it’s up and down, hoping for nerve regeneration knowing that’s a lengthy process and to stem any further damage. The dilemma is trying to live your life with the fear you might make things worse by exercising which is supposed to help stem the progression. I am finding that even my neurologist can’t say for sure what to expect. This forum does help knowing there are others going through the same thing. Please continue to share your experiences. Sounds like your timeline and concerns are very similar to mine.

It seems those exercises are aggravating your symptoms.
I developed peripheral neuropathy rapidly after the Covid vaccine. Like many peripheral neuropathy patients, I am limited in my ability to walk on a hard surface or put pressure on my feet through exercise or yard work. These activities trigger a flare in my nerve pain at night. It's important to buy shoes with heavily padded insoles such as SAS shoes or Hokas. My tolerance for activity has slowly been improving as my neuropathy has improved without more Covid vaccines.