Large Fiber Polyneuropathy

Hello @grandmael, I thought I would share this reference while we wait for other members to share their experience.

-- Electrodiagnostic Testing of Large Fiber Polyneuropathies: A Review of Existing Guidelines:
https://journals.lww.com/clinicalneurophys/Abstract/2020/07000/Electrodiagnostic_Testing_of_Large_Fiber.2.aspx
@casey1329, @jeanniem and others may have some experience or thoughts on large fiber polyneuropathy to share with you.

to grandmael - I have sensory motor polyneuropathy and I also wear foot braces for bi-lateral drop foot. In 4 years, I've seen only one person wear what I have. My PN started first, then drop foot a few years later and one day, the drop foot came on one afternoon, The slap of left foot came literally out of nowhere. Six months later, the other foot. I have bad knees as well, but orthopedic surgeon will not replace due to fear that if I have a fall and land on knees, could be a serious real problem. Back issues L-3 to S-1. Orthopedic docs tell me PN is not from knees and not from back based on MRI. Neurologists tend to lean in one direction as to "possible causes" while orthopedic doctors normally don't agree. Leaves one scratching their head. Lots of guess work involved, unfortunately, many times no cause is the end result. Just don't know I've heard more than once. Best to you on your journey.

Thank you so much John!

Hi Ed,
Thank you so much for telling me your story. Very similar to mine - I feel more sane that there is another person out there that wonders where this problem came from. If this is the worse I will get, than I guess I can deal with it. I just started using a cane which I did not want to do but my balance is better. And I use to walk 4 miles a day! Go figure. Best to you and yours. Happy Holidays!
grandmael

Have you had an EMG? If so, what did it show?

With those questions out of the gate, I am sorry for your frustrating experience. What I have learned over the years is that everything is connected and usually far more complex than most individual doctors are prepared to address. For example, I have trouble with me feet and ankles, left worse than right. EMG and Podiatrist exam show Tibial neuropathy. Ultrasound shows tibial nerves at the ankle clear and healthy. At Mayo, I saw a spinal doc and a neurologist. (The spinal doc was also a physiatrist.) The spinal doc referred me to the neurologist who dx me with large and small fiber neuropathy but said my symptoms didn't fit the picture. He felt there was something structural in the mix and I should follow up with a physiatrist (remember, the spine doc was one). The spine doc disagreed and closed my case. Sound familiar? You see two doctors - even ones who work together - and they have different opinions. I have been dealing with this for 4 years and am still working to solidify a care team to help me understand what I am dealing with.

Thankfully, I found a curious neurologist. I love her and hope she stays with my health system! We have learned that, in addition to the large and small fiber neuropathy dx at Mayo, I have CRPS-ish symptoms in my left ankle and central nervous system involvement. This neurologist noticed my reflexes were hyper-active and, on a hunch, had me try a low dose of baclofen. I am not sure what is happening in my CNS but it does respond to the baclofen.

Now, to really mess with your brain . . . I came down with COVID this week. My muscle spasms disappeared completely for the first 4 days I was sick and I have only had a couple last night and today. WHAT? The same thing happened after my hysterectomy. Is whatever is happening in my body tied to an auto-immune response that is suppressed when my immune system has something real to fight? Or is it because I am laying down and off of my feet? It is a mystery. :-p

Why the massive overshare? To demonstrate that our bodies are so complex. I pray that you will find doctors who will be helpful along the way but, ultimately, no one will ever know your body the way that you do. The best thing I have done for myself is work to find a balance between fighting for a helpful medical team and learning from my own body. I love that you have found a way to walk 4 miles a day!! You are already finding ways to work with your body. 🙂

grandmael -- Wow...four miles a day. Impressive! I have trouble with 4 blocks. Wanted to let you know that due to my poor balance, my neuro doc has put me in physical therapy to hopefully improve my balance. I go to PT 2 days a week and my physical therapist feels that after 5 weeks, he is seeing small signs of improved balance. I don't see it but he does, my exercises are geared towards balance deficiencies. It isn't easy but I will continue on because many of us with PT, as you know, the fear of falling is concerning. I feel virtual support groups are helpful and Mayo Connect has given me the ability to communicate with others having similar effects from PN. I've learned a lot from this site and THANK YOU TO ALL OUR MENTORS!!!

Hi Ed,
I have often thought of physical therapy for balance and I plan on asking my Neurologist about it in January during my next appointment. I appreciate your response. I hope to keep in touch with Mayo Connect! Great people and Mentors!!
Happy Holidays
grandmael

Hello!

I was diagnosed with idiopathic axonal sensory/motor PN a year ago. A few weeks ago, when I asked my neurologist if my PN is large fiber, he answered: "Almost certainly."

Unrelated to my PN (at least, I believe it's unrelated), my annual labs showed I had a low red blood cell count. As a result, I've been seeing a hematologist. I saw him earlier this week, and he ordered new blood work. Again, I have a few lines out-of-range (Creatinine 0.74 [low], Sodium 130 [low], Carbon Dioxide 19 [low], Free appa Lt Chains 22.3 [high]). None of my doctors thinks there might be a relationship between my low RBC and my PN.

Has anyone experienced both low RBC and PN? If so, what was the relationship? If there isn't one, so be it. If there is, however, I'd welcome a chance to approach my doctors about the relationship others have discovered.

Cheers!
Ray (@ray666)

Hello–– I thought I'd ask if anyone has had any recent experience with large fiber neuropathy. Yesterday, I had my second EMG. The first had been 18 months ago. The neurologist yesterday confirmed a diagnosis of large fiber axonal polyneuropathy. The one bright note in what he had to say was that the two EMGs showed little, if any, negative progression. He attributed that to my continuing to move about, do balance work, stretch, and eat well. (Privately, I know I could do better on each count. 🙂 ) I would welcome hearing from others living with large fiber PN. ––Ray (@ray666)

Ray - I've noticed that when I'm more active from April to early November, the progression seems to be very little and I've noticed through the years that the progression, if any, seems to occur during or following the winter months, less active. I wonder if people back in the 1800's had PN....they did more walking.