Increasingly Difficult to Accept Peripheral Neuropathy

I have numbness in my left calf and top of foot and under feet. I saw my neurosurgeon today. He operated on L3/4 this past Jan. Say that the pain went away but not the numbness. Depends how long the nerve was squeezed. I am so tired of going to these MRIs and medical appointments and no one to go with; no family and an occasional person. When they see you suffer, they run away. I also have meningiomas

Good morning, fellow PNers!

Ditto to all that Ed (@njed) has said. I did much the same: I went from my diagnosis (like Ed's, also non-diabetic idiopathic sensory/motor PN) straight to learning as much as I could about my disease. (It did take me a while before I'd use the word "disease;" good ol' denial had me using words like "condition" and "situation.") Contact's mentors, like John, directed me to several sites (e.g., the Foundation for Peripheral Neuropathy) that helped to educate me and lessen my stress.

Something else I've been doing since getting my diagnosis is phoning and sending letters to my legislators asking that they put the full force of their office behind nationwide research funding. Friends have told me I'm wasting my time trying to persuade legislators. That's not the point, however, which my friends only partially understand. The point is to DO something, like educating myself and sending letters.

At first, PN left me feeling helpless. I hated that feeling. I felt like a marshmallow with a disease. I couldn't live that way. I may have to live the rest of my life with PN, but I don't have to live like a marshmallow. I encourage all of us to look for something that can be done, whether learning all you can about your disease (ah, I said "disease" LOL) or pestering your local politicos. It can make a difference. It sure has for me. 🙂

Cheers!
Ray (@ray666)

I have the same problem as you. I take clonazepam everyday and have for 23 years. It helps me wonderfully and at least my continual balance and visual problems don't throw me into panic attacks anymore. Mine is from central nervous system neuropathy and damage to my central nervous system. I have been on the dosage for 23 year's. But good luck finding a doctor that understands that. My new doctor, because mine retired didn't want me on it and took me off of it. So for a year and a half I couldn't get off my bed without falling. Finally after many test's Mayo said that I should have never been taking off of it and need back on it. They don't prescribe medication so they said that my primary school since it's neurological. She refused. I finally had to go to a psychiatrist and he put me back on it. I have been doing so much better. Now I was informed that he is retiring and I am terrified that the next one will screw me up all over again. If anyone knows of someone that will help me please advise. Same for you, if you can find someone to try it on you it might help you as it did me. Panic attacks are the worst and mine were constant. Good luck 🙏🙏