1. < Neuropathy

Are the symptoms weird?

Posted by robindancer5678 @robindancer5678, Jul 26, 2023

So I am new to small fiber poly neuropathy (symptoms started in February, diagnosed in June) and I’m having symptoms that I think are weird, but might be normal. What do you think? Some days I am fine and I am able to dance and walk for miles and I live my normal life. Then the next day I could be floppy in my gait even though I can go to the gym and press 70 pounds with my legs and be on the stationary bicycle for 25 minutes. Some days there is no tingling, some nights the tingling feels like I’m being electrocuted through all my limbs, and I need to grab a couple of gabapentin in order to sleep. Some days I have no twitching in my extremities and other days my muscles say hello to me with twitching periodically. Is this normal? It feels like it waxes and wanes (daily!) and I don’t understand it. AND some days I have fluttering in my chest, which my cardiologist says is not cardiac and may be GERD and some days breathing is a bit labored. I had an I had none of this prior to the start of the polyneuropathy. Off to the pulmonologist today. Thoughts?

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jwkelly72 | @jwkelly72 | Jul 29, 2023
In reply to @emo "Oh, I agree with you. I planned to talk to my physiatrist (a physical medicine and..." + (show)
@emo

Oh, I agree with you. I planned to talk to my physiatrist (a physical medicine and rehabilitation specialist) because she works at a rehabilitation hospital. They have a specific Wheelchair and Seating clinic, so if she could write me an order to be seen there, they have PTs and technicians (it’s a large rehab hospital) who will meet with you to figure out what works best and potentially we could get the wheelchair rental covered by insurance. If I do it, there’s a chance we could get one more adapted to my condition for much less or covered by insurance than if I just bought or rented it on my own. (I would never have known that except my father had a stroke, and we thought we were stuck with the chair they discharged him with, and turned out that was not the case after his doctor sent him to the Wheelchair and Seating Clinic.)

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Got it, hope everything works out for you, blessings

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blearyeyes | @blearyeyes | Jul 30, 2023
In reply to @macj007 "Similar symptoms for me caused by annular tears in the lumbar spine. Does your MRI show..." + (show)
@macj007

Similar symptoms for me caused by annular tears in the lumbar spine. Does your MRI show the same?

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Hey Mac,
Neurologist said severe lumbar osteoarthritis. Didn’t mention annular tears. What are those?

Just Googled it…

https://www.bonati.com/conditions/annular-tear/

they have a lot of information regard spine issues.

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Jupiter19 | @macj007 | Jul 30, 2023

Does your MRI report show annular tears?

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raysbabygirl | @raysbabygirl | May 2 8:46am
In reply to @ray666 "Hello, robindancer5678! (@robindancer5678) Welcome! You're not alone in wondering if your symptoms are weird. I often..." + (show)
@ray666

Hello, robindancer5678! (@robindancer5678)

Welcome! You're not alone in wondering if your symptoms are weird. I often wonder the same thing. I was diagnosed in August of last year with idiopathic peripheral neuropathy. My neurologist didn't go so far as to say "polyneuropathy," small or large fiber, sensory or motor, but I'll be meeting with him again in two weeks when I hope to get more clarity.

My PN appears to be situated chiefly in my feet, at least for now. I'd initially gone to see my neurologist because I had been noticing how my balance and gait were beginning to play tricks on me. I've had a few falls but no serious injuries. The EMG I had a year ago showed measurable sensation loss in my feet, although without that EMG, I might never have guessed I was losing sensation.

I, too, have good days and bad days. On my good days, I can walk short distances, a little unsteady at times, but with little fear of falling. On my bad days, I'm always on guard, carrying a cane, letting my fingertips trace walls, countertops, and other stationary surfaces. I'm blessed that I still have no pain, just my alternating good and bad days. And like you, even on my bad days, I can climb on my stationary bicycle and peddle without any unusual weakness. If I try walking on those bad days, I can only go a short distance before my legs feel weak and I'm ready to sit down. Mysterious stuff, this PN!

I'm glad you posted your question about weird symptoms.

Cheers!
Ray (@ray666)

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I have been diagnosed with mixed Polyneuropathy. I get off balanced almost daily. I’m like a drunkard. I don’t understand what I have. I also have radiculopathy

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