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 🙏🙏

Find something for the pain . I went without pain meds for about 6 months . I thought I would lose my mind . I use several things for pain . It has been a long sometimes painful journey . THC salves and gummies have helped me . I also make my own thc tinctures that I take at night to help me sleep . I had been on Lyrica . I had anxiety issues along with very dark thoughts . It was difficult to do anything . I was so scared to do anything . Lyrica is an evil medication . I have bad days and really good days . The Mama bear salve is total BS . I went to a Chiropractic clinic promising big results . I spent several thousands with them . Very little help . Be careful there are some very crooked people out there trying to swindle people who are suffering out of their money . The Soft wave treatments are expensive and did not help me at all . Keep your head up . You can do it !!!

Your comments are so right on . Keeping busy doing things to help yourself builds self confidence . Good job !!!! Thank you for your comments .

Have you tried to find a pain clinic ? A friend of mine is a pain specialist . He got me on the right track . Not giving in can be tough . I had a social worker tell me to look into thc products such as salve and gummies . It all helps .

Thank you, kbirchem! (@kbirchem)

Your words meant a lot to me. HAPPY THANKSGIVING!

Cheers!
Ray (@ray666)

It helps just sharing ideas with other people . We need to make more people aware of all the scams out there . I had a chiro clinic in Fargo that was not too happy with me calling them out on FB . I mentioned names, dates . Take care . KTB

Hi, @kbirchem

You're right about the seas being afloat with scams. Snake oil is everywhere. I have far less difficulty turning away from the online scam artists; they don't know me, nor do I know them –– or wish to know them. However, what I have some difficulty with are friends who hurry to tell me about the latest cure-all, most often some salve or ointment they purchased online and received only a few days before (hardly time enough to report fairly on the salve's or ointment's effectiveness). I have a ziplock bag of something or other in my fridge right now, presented to me with great reverence by a close friend, who swore a few handfuls every morning with my shredded wheat and all of my aches and pains will –– presto! –– be a thing of the past. Now I'm waiting for that phone call: "Well, is it working for you?" Talk about being put on a spot! 🙂

Cheers!
Ray (@ray666)