Are wobbly legs with PN caused by muscle weakness or fear?

Posted by jrob @jrob, Oct 5, 2023

I've had PN for years but suddenly when there are stairs with no railings or very uneven surfaces my legs wobble uncontrollably leading to a fall. My neurologist recently said I'm strong and there should be no reason for this and I should find a good psychiatrist. Would like feedback on this because it sure feels physical to me.

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@bjk3

It's not in your head...it's real. My PT just introduced me to an interesting new exercise that she just learned about from a classmate at a recent seminar. She placed several objects of differing shapes and firmnesses under a couple of big folding floor mats used for gymnastics and had me walk from one end to the other, both ways. When I was able to anticipate what something would feel like with the minimal sensory receptors that work, I could walk with a bit more confidence (albeit with a person on each side of me at the ready) but only with a cane and very, very slowly. It definitely is a physical thing from where I stand. And -- as for rails -- absolutely necessary unless someone offers an arm. 😇
Have a great week!

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Hello! Even though I expressed puzzlement over walking instability (Is it in my joints or in my head?) I've always suspected it's in my joints, even though my individual muscle groups test as 'strong.' The exercise you describe sounds really helpful. I'm always on the lookout for ideas to stimulate the remaining 'alert' nerves in my feet. Regardless of what my EMG said, I still have a decent measure of sensation in my feet, just not enough. I fact, if it hadn't been for my EMG, I might never have known I'd lost sensation. Good luck to you. Have a wonderful week! ––Ray (@ray666)

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I love my walking sticks , from Amazon, very much like ski poles. They are lightweight and keep you standing upright if properly adjusted. Seem better for me than a cane when I'm walking any distance.

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I have strong leg muscles! I also have good ankle and knee joints. What I don’t have with my PN are the proper nerve signals to get my muscles and joints to play together nicely. Despite extensive physical therapy, I’ve learned I have no reflexes or ability to flex these joints or expect them to bear much weight. I’m very happy my muscles have conquered the ability to keep me upright and allow me to “walk” however ungracefully. But stairs or extraordinary uneven surfaces? My legs get wobbly when I confront those even if I have handrails or a cane/walker! It’s not in your head, it’s in your PN. Shame on that doctor for adding stressful thoughts to your dilemma. My 2 cents is to keep those leg muscles strong, and make sure you avoid (or ask for help) when you’re confronted with an unsafe predicament. We have enough challenges than we can ill afford an injury from falling.

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@carolann1952

I love my walking sticks , from Amazon, very much like ski poles. They are lightweight and keep you standing upright if properly adjusted. Seem better for me than a cane when I'm walking any distance.

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When you say wobbly legs do mean from the foot to the quads. Are your quads stiff and painful like muscle overuse and do they feel heavy

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I was recently told the same thing. My Neuro said my anxiety was causing me to be short of breath. I have a paralyzed diaphragm and a lung obstruction from my scoliosis. I wonder if he even looked at my chart? I had a visit with a Neuropsychologist for which I made no connection. Trust your gut. If it feels physical then it could be. I have fallen many times starting in my 50s. I am 74 now. Such a long story. Hang in there and yes; fear of falling is frightening.

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@dbeshears1

I have strong leg muscles! I also have good ankle and knee joints. What I don’t have with my PN are the proper nerve signals to get my muscles and joints to play together nicely. Despite extensive physical therapy, I’ve learned I have no reflexes or ability to flex these joints or expect them to bear much weight. I’m very happy my muscles have conquered the ability to keep me upright and allow me to “walk” however ungracefully. But stairs or extraordinary uneven surfaces? My legs get wobbly when I confront those even if I have handrails or a cane/walker! It’s not in your head, it’s in your PN. Shame on that doctor for adding stressful thoughts to your dilemma. My 2 cents is to keep those leg muscles strong, and make sure you avoid (or ask for help) when you’re confronted with an unsafe predicament. We have enough challenges than we can ill afford an injury from falling.

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Good morning, Debbie

This resolves the issue, at least for me: my inexplicable joint weakness when I'm walking (formerly inexplicable), although all the involved muscles test as "strong," is another of the mysteries of my PN. The unsteadiness is not in my head. Nevertheless, as you urge, Debbie, I fully intend to keep working on my feet, legs, knees, and hips strength.

Non-handrail stairs are my nemesis, too. If there's a handrail, I'm okay. Recently, I've declined to go to the theater or to movies (especially to movies with a 2-1/2 hour running time, where I know I'll have to get up mid-movie and find a Men's Room) because almost always the auditoriums have boast wide, soft-carpeted stairs and NO handrails. It's a choice between getting up in the dark and looking for that Men's Room –– and taking a chance on not falling –– or staying in my seat and wiggling. 🙂 My PN suggests: Stay home and read a good book.

Ray (@ray666)

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@ray666

Good morning, Debbie

This resolves the issue, at least for me: my inexplicable joint weakness when I'm walking (formerly inexplicable), although all the involved muscles test as "strong," is another of the mysteries of my PN. The unsteadiness is not in my head. Nevertheless, as you urge, Debbie, I fully intend to keep working on my feet, legs, knees, and hips strength.

Non-handrail stairs are my nemesis, too. If there's a handrail, I'm okay. Recently, I've declined to go to the theater or to movies (especially to movies with a 2-1/2 hour running time, where I know I'll have to get up mid-movie and find a Men's Room) because almost always the auditoriums have boast wide, soft-carpeted stairs and NO handrails. It's a choice between getting up in the dark and looking for that Men's Room –– and taking a chance on not falling –– or staying in my seat and wiggling. 🙂 My PN suggests: Stay home and read a good book.

Ray (@ray666)

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Ray - I went to the Baltimore Orioles stadium a couple of times this season. I didn’t have special seating, but could manage going up and down the bleacher steps to get to my seat because with the railing they had (for me, climbing UP is easier than descending steps). Then we went to the Cleveland Indians/Guardian stadium for two games, similar seats were selected. I was alarmed to find no rail at all to get down/up to our seats. I had to waddle like a crab, holding each side chair without trying to touch people that may have been sitting in them. My fault for taking rails for granted, but no handicapped seats were available (online) when we were selecting our seats and I assumed I could manage it. But folks are so nice, they almost always offer to help!

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@dbeshears1

Ray - I went to the Baltimore Orioles stadium a couple of times this season. I didn’t have special seating, but could manage going up and down the bleacher steps to get to my seat because with the railing they had (for me, climbing UP is easier than descending steps). Then we went to the Cleveland Indians/Guardian stadium for two games, similar seats were selected. I was alarmed to find no rail at all to get down/up to our seats. I had to waddle like a crab, holding each side chair without trying to touch people that may have been sitting in them. My fault for taking rails for granted, but no handicapped seats were available (online) when we were selecting our seats and I assumed I could manage it. But folks are so nice, they almost always offer to help!

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I’m often astounded at the small size of what for me is a challenge. The dental clinic I go to encourages patients to enter by the front street door and exit by the side street door. The side street door opens on a backlot and asks that patients go down two small cement steps to the sidewalk. There’s no handrail and nothing within easy reach like the building wall that might be touched –– and as many of us with PN know, a simple “touch” is often all it takes to make us feel safe. As I hop out of the dental chair, I tell the hygienist I’m going out by way of the entrance. She knows me now and simply says, “I understand.”

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@ray666

I’m often astounded at the small size of what for me is a challenge. The dental clinic I go to encourages patients to enter by the front street door and exit by the side street door. The side street door opens on a backlot and asks that patients go down two small cement steps to the sidewalk. There’s no handrail and nothing within easy reach like the building wall that might be touched –– and as many of us with PN know, a simple “touch” is often all it takes to make us feel safe. As I hop out of the dental chair, I tell the hygienist I’m going out by way of the entrance. She knows me now and simply says, “I understand.”

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Ray - I can relate! My most humorous doctor visit was at a Neurologist, who helped me up on the high table for an exam, then later left me sitting on it with a "I'll see you in 6 months, you can let yourself out". My shoes & socks (and walker) were on the floor and well out of reach, and I couldn't safely get off the table because it was too high and had no bed rail or anything to hold onto. I had to yell "Hello? Hello? Can anyone out there help me???!!" several times before a desk worker came in for me to explain to her that my Neurologist must have forgotten I was handicapped and unable to safely get off the table. But you're right, there are little things even our doctors can take for granted.

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Can anyone relate to wobbly legs/shakiness that is "inside" versus visible from the outside? I'm experiencing this every day now. It's a little disconcerting. Assuming it's related to PN?

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