Can PN have multiple causes?

Ed - It sure is confusing. New appointment in new state last week to get established (or re-established after 6 years), and the Neurologist asked for my current symptoms... I mentioned cold (and sometimes heat) intolerance in hands/feet, finger/toes, and she abruptly stopped me & said they weren't symptoms of neuropathy, and that she would just read off a list of symptoms and I can answer yes or no if I have them. I was absolutely befuddled, but at the end of her checklist, I told her "Look, I am very sorry, but at the very start of this PN in 2016, I wore gloves & socks to bed every night, and usually during the day for 4 months (unless a hot flash extreme came on), as it took that long for the Gabapentin to help make the cold/heat intolerance bearable. I politely told her I had a hard time believing that wasn't on the list! She acquiesced and said OK, and her visit notes listed it. But what I was really wondering afterward was if this heat/cold extremity intolerance was a symptom of SFN not "Axonal" (or vice versa), and maybe a reason why she wasn't expecting me to list it. Maybe just an irrelevant moment, but as you now, we're all trying to figure it out.

@dbeshears1 -Boy you are right, talk about confusing!! If I'm right & you have axonal sensorimotor, I'm confused on why you take Gabapentin? When I went to Mayo in MN, they told me in no uncertain terms that with my PN.... NOT to take Gaba or Lyrica...it could possibly make my gait worse. I'm not sure it could get much worse than what it is. I guess your symptoms could differ from mine. Or perhaps the causes differ but the symptoms are the same except mine took decades to develop. This heading of possible multiple causes is something that should not be overlooked. The mystery continues....the best with your new doc.

Yes, we have same diagnosis, but mine all started & crashed over 10 days, and I’ve picked myself out of my wheelchair since then, had to learn balance & walk again; my knees just buckled and that was the main handicap I had to overcome & rebuild, though my hands are affected too. The Gabapentin has helped tame the terrible cold/heat intolerance that I had at first, and it’s only a nuisance now. But the main thing Gabapentin does for me is to control the deep nerve (not muscle) pain I get in my legs and hands. I almost always know when it’s time for another dose, as the pain sets in. I love the rare occasion that I realized I missed a dose and didn’t hurt! I know some folks, especially with SFN diagnosis have the heat/cold, but no pain with their tingling and numbness. I think that’s why I like to dig for all diagnostics they’ll allow, so help steer me toward the mist tried and true remedies for a given symptom. I think the one universal remedy, as you know, is activity!!

Your Lyrica dose could be increased, that might help. As for the EMG, I’ve had three. I say a prayer first, go into a zone where I imagine what torture POWs have to endure, and say the “s” word when I can’t stand it. Yes, it’s an awful test, but then I live in pain every day. It gives really helpful information. Hopefully your medical team knows you are worse and need some help.

The dr doesn't want to increase it. The EMG what exactly does it show? How long does it last? You think it's worth having the test done?

My heart goes out to you.

@dbeshears1 - Now I know why you are on Gabapentin. I have all numbness and poor motor skills from shins down. The only pain I ever had was about 3 - 4 yrs ago, it felt like somebody took a pair of pliers to my toes and was pinching them for a minute or two. You are right, as difficult as it is, activity is so important to the extent what each person can do within their own comfort range as well.

I have been very fortunate with the EMG’s I had, 4 so far. I honestly didn’t experience pain. Just a little discomfort when they’d stick a pin in here and there, and the little electrical jolts, but I can honestly say I like EMG’s better than getting my biannual dental cleaning! I hope if needed you go ahead and get one!

I found a helpful article that explains more about the EMG and NCS. ncbi.nlm.nih.gov Electrodiagnostic Evaluation Of Peripheral Neuropathy.

In February I was tested and confirmed to have CMT. Since, I have notified cousins to find I inherited the disease from my Grandmother’s side of my family. All CTM cases in my family had been undiagnosed however they have same symptoms. High foot arch, toes have knuckles, hot, itchy feet and hands and eventually it moved to arms and lower legs. My legs now give up after being on them for about 20 min. Where I was a very active 70 year old to needing 12 hrs of sleep a day. Balance is poor and am now looking for an Occupational Therapist to work on balance and walking. My eye sight is changing and I have an appointment with a surgeon to check the optic nerve. Randi from BC Canada

That sounds exactly like my experience, Randi.