New to neuropathy without pain

Hi, @josef3. I think we all go through a period of frustration when we're first diagnosed. I did. The ENG you'll soon be getting may not eliminate all of your frustration. I've had two myself, the second one only last Friday. So far, my EMGs have only eliminated possible causes but not identified one. I was also invited to do a DNA test (a possible hereditary cause?), but I'll not get the results for a few weeks. My neuropathy (so far) is idiopathic large fiber axonal polyneuropathy. I'll keep this post short. I know you'll soon be hearing from dozens of Connect subscribers. Connect is a great place. I'm glad you've joined! –Ray (@ray666)

So sorry to hear about your troubles. It is helpful to go through the steps of the workup and it is frustrating. As @ray666 was alluding to, the EMG could still come up negative, but with an MRI and EMG both coming up negative, it doesn’t negate your pain. Neuropathy/nerve pain can occur without an identifiable cause (“idiopathic”).

I didn’t know this and I wish I did so figured I’d mention it: An EMG will show a large fiber neuropathy, but small fiber neuropathies (that affect temperature, pressure, and sensation only, but doesn’t generally directly cause muscle weakness) do not register on an EMG. After my first normal EMG, my neurologist was very dismissive, but it turned out I had small fiber neuropathy.

I had a thoracic to lumbar fusion at age 11 for scoliosis and later developed POTS (an autonomic nervous system condition) and idiopathic small fiber neuropathy later but we’ll never know if it’s connected. One of my neurologists suspected it could impact my POTS because of the level where my fusion starts.

I won’t lie, neuropathy is tough, if that ends up being the diagnosis but there are things you can try and a lot of posts here already and others who share what’s worked for them.

Ray,
Thanks for responding do you have pain? I don't which is weird and were you able to get any help? Thank again for responding I feel so alone

It is very frustrating Jose3. Especially when my neurosurgeon told me that there is no cure for it.

@josef3, good morning. No, I don't have pain, just this balance iffiness and a weird way of walking (thanks to the iffiness). I remember a few years back when I'd be meeting some new doctor or clinician for the first time and telling him or her that I had no pain. They'd give me the most curious look like I MUST have pain, at least SOME. But no, I'd have to insist, NO pain. Have I gotten any help? Well, yes, but not "help" in the form of a cure (I accept that there is none); but various management techniques (like checking to be sure my B vitamins are up to snuff) so as to slow or prevent any worsening of my symptoms (balance and gait). I'm a great believer in being an advocate for your own health. As I read somewhere recently, of folks with chronic conditions, 20% simply give up and fall into despair; 60% let their doctors do all the prescribing, never asking them how, why, or what for; and the remaining 20% are advocates, always asking how, why, and what for, studying up on their condition, and getting as much exercise as their condition will allow (staying in motion). I wish you all the best! Stay in touch. Keep posting. –Ray (@ray666)

It doesn't take long for my ankles and feet to cramp up tingle and burn when I spend time at the grocery store. I guess you could save some long-term walking. I got so angry that I decided to go back to swimming. My daughter bought me a health club membership. I stopped swimming when I had other health issues. By being so
Sedentary I found my cramping and pain got worse. I went back to swimming and I'm sure it cause blood supply to pump around my body. Sometimes I just dog paddle but I keep moving no matter what. I think it's helping. I have to be sure that I take magnesium and potassium before going swimming or else an attack might occur. In my experience mag and potassium seem to help me a lot. I have a friend who has to stay away from both of those things because she's a diabetic and has other issues. It's best to really look it up and see when it's not good to take it. I am feeling much better with swimming. My doctor encouraged me to exercise for 20 minutes three times a week. She said to be sure and get the blood pumping and the Heart beating. That's all I've got. I wish you well and good luck.

Hi Ray…I stumbled across a study looking at people with idiopathic axonal poly neuropathy. In a nut shell, the study was looking at the relationship between metabolic syndrome and neuropathy. Metabolic syndrome in layman’s terms is having high blood pressure, high blood sugar , high cholesterol and large waist size ( typically at least three of these). The study showed a higher incidence of neuropathy with people who have metabolic syndrome…and particularly those with high blood pressure…the theory being the high bp causes micro vascular damage…which damages the axons. I’m curious if you have metabolic syndrome…particularly high blood pressure. ( I fall into that category). It may be a hint as to what’s caused the neuropathy.
Steve

Hi Steve, Thought I would pop in while you wait for Ray @ray666 to respond. I do fit the metabolic syndrome and only learned of it a year or so ago. I had already started working on changing my lifestyle with losing weight, exercising more, eliminating as much processed food and sugar as possible and just being more conscious of healthier choices. I hadn't seen that research article but did run across quite a few others. I thought I would share them for others who aren't aware of the metabolic syndrome and it's connection to neurological disorders.

-- Diagnosis and Management of the Metabolic Syndrome
https://www.ahajournals.org/doi/10.1161/circulationaha.105.169404
-- The metabolic syndrome – What is it and how should it be managed?
https://journals.sagepub.com/doi/full/10.1177/2047487319886404
-- A comprehensive definition for metabolic syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
And the YouTube video that got me thinking more seriously about my lifestyle choices...

Hi John…this is the study info…
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3609524/
Steve

Hi, Steve (@stallen)

I should have heard of metabolic syndrome before (and I probably had, but like so many things, it must have just zipped by). You and John (@johnbishop) have given me lots to read up on. Tomorrow, my weekly no-Internet day, I was planning on starting Zadie Smith's new novel, but now it looks like I'll be reading up on metabolic syndrome. 🙂

To answer your questions, Steve, my PCP found my blood pressure to be on the "high side," but not alarmingly so, and that diagnosis was 20-30 years ago; I have been taking a script medication for blood pressure ever since, but most days now the cuff tells me I'm a textbook "norm" (120/80). To the best of my knowledge, my cholesterol is fine (I can't recall my PCP ever saying it's not); I'm 99% off of all refined sugars (I quit cold turkey in 1976 when I read William Dufty's "Sugar Blues"); and my waist is "about right" (in my opinion): a little bulgier than it was in my running days, but nothing that would put a strain on my car's seatbelt (I'm 6'0" and weight 160-164 lbs.).

I'm not discounting the possibility (the jury's out until I read all the studies you've sent), but it doesn't sound like a good candidate for metabolic syndrome right now.

Ray (@ray666)