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Should I see a Neurologist who specializes in PN?

Neuropathy | Last Active: 3 hours ago | Replies (13)

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Hi @scain, It's a tough question to answer for me because I only have numbness but I have asked myself a similar question. I spent 40+ years watching my numbness starting in the toes, then the feet, then the legs until I decided to see a neurologist have some tests and get my diagnosis of idiopathic small fiber peripheral neuropathy. During those 40+ years I had many different PCPs and they all said it's probably neuropathy and nerve damage. I had asked many of them if I have the different nerve conduction tests and exam what can you do to treat the numbness and the answer was always, we can only treat the pain and there isn't anything we can do for the numbness. So when I finally just had to know and set up an appointment with a neurologist and received a diagnosis, I got the same answer from him that I had from all my PCPs - we don't have any treatments to help with the numbness. That's what brought me here to Connect.

I also was worried about progression. In your case it may be different since you are taking medications for the pain and there may be other treatments that work better for the pain. You mentioned your PN is due to type 2 Diabetes. Are you able to manage your diabetes OK or have you made any lifestyle type changes to see if they may help some?

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Replies to "Hi @scain, It's a tough question to answer for me because I only have numbness but..."

@johnbishop Thank you for your thoughtful response. I think that maybe we all fall into 2 camps. Those of us who know in our hearts (because we have seen the doctors and specialists and have done our own deep dive into PN) and those people who continue to believe that there is something more to be done to fix this problem. I will say that I am having a tough time with my diet and that when I really think about it, I continue to come up with the same answer. I am the daughter of a Maine farm raised registered nurse who always prepared wholesome, healthy meals for the 7 of us 3 times a day. We weren't allowed sodas, sugary cereals etc. and my mother would never serve cauliflower with chicken as they are both white in appearance. So I carried that way of eating throughout my life. I don't eat fried food, fast food etc. However, even as a kid, I would ask my mother what the dessert was and if I liked the answer I would eat the dinner. The rule was no dinner, no dessert. Everything she prepared was from scratch and she was a wonderful cook. I have never found cooking to be anything that interested me. I eat to live not the other way around. So with all of that back story, I still love sweets. We always have one fresh veggie per meal, eat lean meats etc. but I love my baked goods too. So I am having a particularly difficult time with sweets. Our family is thin by hereditary so weight was never an issue. I know in my heart of hearts that I have to pretty much give up sweets and I have a difficult time with this. I am 5'8" and not overweight but that doesn't seem to help with diabetes 2. I hear a lot on tv etc. about what are they called??? GL something or other. The new weight loss drugs that are suppose to hamper your appetite, lead to weight loss and have some other beneficial effects. I think that I am going to try to make an appointment with my primary to discuss possibly trying one of these if it would help with my sweet tooth. I don't eat bon bons for breakfast 😉 but like a dessert after dinner. The whole wheelchair scare is real for me and not acceptable. Also losing feeling in my hands would be devastating as I craft most days and love doing so. I think that I have always loved it in one form or another and that is why cooking in general never held my interest. Why make something that is gone in minutes when you can spend time making something that lasts for years????!!!! The logic is there for me but I absolutely need to change some of my 78 year old thinking. It is a tough pill to swallow and the journey is different for each of us. As Katherine Hepburn said "getting old is not for sissies". This is so true. Thank you again for your sharing your experience with this damned PN. Honestly, there have been so many medical breakthroughs in heart and cancer treatments. Why did we have to wind up with life alternating diseases that have not had the same research??? I am just selfish enough to not want to see a PN Neurologist and have a lot of testing done for possibly future research that won't benefit me. Puuuulease.....can't be bothered! Thanks again and I hope that you are finding some joy each day that overrides this frustrating disease.