Should I see a Neurologist who specializes in PN?

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?

Yes, see a neurologist specialized in P.N. without hesitation. Which is the problem: the cost of a visit or a couple of hours of your time? While it is true that there not specific effective medications available yet, a top notch neurologist specialized in P.N. can alleviate your sufferings. Your primary doctor can refer you to the best P.N. specialist in your area. Hurry up.

thanks for answering. it's not a matter of time or money but rather that
they practice in the city and parking garages can be blocks away. having PN
in my feet means walking distances is a challenge. I will see if someone
can drop me off at the door of the hospitals. thanks again for answering.

@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.

@scain, Thank you for my morning smile! - I can definitely relate to the getting old is not for sissies story 🙃 I also have to watch the sweets and snacks.

Great question and simple answer is a resounding YES! The trouble is, you likely won’t find a neurologist who specializes in PN. If you have a lead, follow it. I’m in the group of “I won’t give up, there has to be answers, there must be better treatments available, they must find solutions”. I’m following leads on mitochondria health to support nerve health at this moment. So I want to offer a positive, encouraging response, but I have to add, I haven’t found a neurologist worthy of the title. I haven’t come across a neurology department that has anything to offer. I’m having to be my own advocate. Don’t give up.

@johnjp
I am with you--I will not give up. I will still go to a neurologist but when I go to him, or any other physician, I must be my own advocate. I, too, am following mitochondria health. My neurologist did blood work that uncovered that I have celiac disease and that is why I have neuropathy which has worsened this year (maybe due to shin biopsy or else cold winter). So even though he may not be a specialist in PN, he did me a solid favor because now I can be on a gluten free diet and try to build my health up that way. I have already seen some improvements in form of no more night sweats and no more breathing difficulties. Foods cost more and I need to prepare my own meals, lest risk gluten contamination. I had to throw out lots of food when starting my gluten free diet last July. I am eating out alot less but I now know what is on my plate. Knowing the cause of neuropathy can allow us to make the dietary and lifestyle adjustments needed to bring about better management of the disease. Yes, some sacrifices may be needed. I also believe that doing some kind of exercise, whether physical therapy or own regimens, will help us avoid frailty, falling, etc. I am also doing vitamin supplements because celiacs have problems with absorbing nutrients There is no one size fits all here! There is knowledge to be obtained and will power is paramount too. We must keep trying!

@johnjp WOW johnip, you took the words right out of my mouth. I have been searching for a neurologist who specializes in idiopathic PN, for 5 yrs, they just do not exist.My GP sort of agrees with me. My GP is in anew practice,now affiliated with Univ. of Florida health care, she is doing research on finding a neurologist who specializes in PN.. UF is a teaching hospital, therefore I am encouraged there may be a possiblity in finding somebody. I have not been to a neurologist in 4 yrs, all they want to do is up the gabapentin. NO NONO!! I am not in any pain just numbness, tingling and occasionaly thighs will burn.. I find that exercise and suppolements such as R Alpha Lipoic Acid. Bentofiamine, and Acytl help,I know spelling is incorrect. I am in vestibular PT now, trying to retrain my brain to walk better, do curbs, and trying to walk on uneven surfaces,grass, sand mulch, etc. I think at times it is working, hoping so. Good Luck and Mayo Connect is wonderful for new up to date info. One can take it or leave it and its free!!! Best Wishes

I totally agree and also want to sing the praises of this site. I actually
found my diagnosis here after googling reasons for numb and tingle
sensation in feet. All of us contributing not only our stories but what we
have found helpful or "don't waste your time or money" stories will help
one of us in narrowing down our own ways to live with this
debilitating disease. We are the generation after all that spoke up when
needed during Vietnam war, equal pay, etc. etc. We will find ways here and
elsewhere to live out the rest of our lives with some joy

@allegheny love your attitude and helpful hints about dealing with this. Thank you for sharing and best of luck finding your new doctor.