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Unexplained leg buckling, balance problems, cognitive changes
My husband is 67 and is currently being evaluated at Mayo Clinic for a combination of neurological symptoms that doctors have not yet fully explained. I’m hoping to connect with anyone who has experienced a similar pattern.
His most unusual symptom began about eight years ago. Both legs will suddenly buckle, almost as though the power to them has been switched off. It is not usually caused by pain or low blood pressure. This can happen after only a few steps and now occurs several times a day. One leg will usually catch him before he falls. His foot sometimes catches or seems stuck to the floor, and he can lose his balance when standing in one place or rising from a chair. His legs are often especially shaky and weak in the morning but improve somewhat after he moves around.
Other symptoms include:
* Constant dizziness and frequent headaches
* Balance and walking problems
* Occasional shaking or tremor of his hands and face
* Increasingly weak or quiet voice
* Trouble swallowing, with solid food sometimes lodging in his throat
* Memory problems, slowed thinking and difficulty concentrating
* Visual flashes or occasionally thinking he sees something
* A right knee that locks after sitting
* Numbness in his fingers
The leg buckling began years before the memory changes.
An EMG showed mild generalized sensorimotor polyneuropathy and severe right carpal tunnel syndrome, but no evidence of right cervical or lumbar radiculopathy.
His FDG-PET scan showed mild-to-moderate decreased metabolism in both occipital lobes. The radiologist described this as nonspecific. His Alzheimer’s-related p-tau217 blood result was in the intermediate range, not clearly positive.
His brain MRI showed mild volume loss in the cerebellum and chronic microvascular white-matter changes, but no stroke, mass, hemorrhage or typical MS lesions.
The cervical MRI showed mild-to-moderate spinal canal narrowing from C3 through C7, with some indentation of the front of the spinal cord. However, there was no abnormal spinal-cord signal or enhancement. The thoracic MRI did not show high-grade narrowing.
A Mayo movement-disorders examination did not find parkinsonism, so a DaTscan was not recommended. We are continuing with gait, cognitive and swallowing evaluations.
Has anyone experienced a similar combination, particularly sudden painless buckling of both legs along with dizziness, swallowing or voice changes, occipital hypometabolism, cerebellar changes or later cognitive symptoms?
If so, what diagnosis was eventually found? Were there particular specialists or tests that helped connect the symptoms? We understand that other patients cannot diagnose him, but we would be very grateful to hear about similar experiences and questions we should discuss with his Mayo doctors.
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@scottmoon
Thank you for sharing your experience. Eleven years is such a long time to search for answers, and I’m glad you finally got a diagnosis. I appreciate you mentioning the biopsies and Syn-One test. I’ll ask my husband’s neurologist whether they would be helpful in his case. Wishing you all the best.
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1 Reaction@marke75
Hi MarkE, thank you for responding. The way you describe your knee suddenly buckling without pain or warning sounds so much like what my husband experiences, except it happens to him several times a day. His legs have been doing this for years, and we still don’t have an explanation. I’m sorry you’re dealing with the dizziness and balance issues too. I really appreciate you sharing your experience. It helps to hear from someone who understands how unsettling this can be. Wishing you all the best as well.
@briarrose Thank you for your thoughtful response and kind words. You’re right that his workup is still in progress, and we’re trying to take it one step at a time. We’re grateful to be at Mayo and hope the remaining appointments will help us understand what’s happening. I posted because I wondered whether anyone had experienced a similar combination of symptoms, especially the sudden leg buckling. I appreciate your suggestion about a second opinion if we need one, and your good wishes mean a lot.
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1 ReactionI had a failed spine stimulator after turning it off I noticed I developed a random weakness in my legs it was a dull ache feeling that was felt randomly but when felt I couldn’t put pressure on my legs ! While in the hospital wearing a gown I noticed it went away , I tried sweat pants again and about fell it was my pants causing me to fall so now I’m stuck wearing HUMILIATING mens sleep gowns and even it is starting to bother me !
Be worth a try to make sure it’s not your clothing causing it ! I believe it’s rubbing the pudendal nerve but I also have Allydonia and Central! Good luck figuring it out Sensitivity
No one really knows besides the doctor & Grok😂
I have a few issues that fit into to many diagnoses.
The gentle issues
Walking not so good fall way to many times.
I’m ok while seated but standing I’m so dizzy I walk like I’m drunk or dancing to music no one can hear.
Standing ok some what
Falling - that’s the reason for my cane. Neuropathy in both feet, legs,arms and up the left side of my face.
Can’t really feel a lot below my knees
Hands and arms aren’t far behind it’s like I’m being stabbed with an ice pick. Over and over.
Then the harder issues
Getting back up after falling
I take pain meds that only help about 60%
Talking is very frustrating- I say talking with me is like a game of charades. You just try to guess what I’m trying to say
Swallowing- yeah there’s a tough one. I do pretty good if I use a straw. It like sets my throat up to swallow.
Wiggling - I’m always moving somewhere unless I’m mixing something in the kitchen, then I’m flinging things. Not good!
Vision - goes from color to black & white, then back to color. Like a movie where the black & white is in the past. This is Really weird!!
General mental issues:
I have trouble with small words. Reading, typing or speaking. The other day I tried to read an article and got stuck on “with” or “got” and “From” …..not just stuck I didn’t know the words
I’ve had several x-rays, CT scans, MRI’s, Spinal Cord Stimulator implant and I think LabCorp has more of my blood than I do.
3 DNA test and last week a spinal tap. I guess now they’re looking for maple syrup
My neurologist Dr Germin seems to think I have Huntington Disease 🦠 not really a good thing.
Actually I just want a diagnosis so I can be treated for that instead of the last 4 yrs my old neurologist said I had CIDP (Chronic inflammatory demyelinating polyneuropathy )
Which sounded like it fit, only my issues have surpassed or graduated to a new diagnosis
Anyone on here know much about Huntingtons disease? What I’ve read sounds like me but nothing I can see and say…. Ok, that’s what I have to deal with. Good or bad it’s what’s coming. Take care everyone and thanks for letting me ramble ❤️
I also experience my leg(s) occasionally just giving out. It can happen anytime - walking, standing up, gardening, etc. It has resulted in numerous falls in the yard, parking lots, kitchen bedroom, patios, restaurants, etc. So far, I have avoided any injuries other than cuts/bruises. When this happens, I have to wait until my legs will function before I can try to get up. Often, I can't move my leg at all for a short while.
My neurologist thought it might be primary periodic paralysis, but genomic testing did not confirm this. I do have white matter disease, lacunar strokes, and an abnormal EEG, so these may be contributing factors. Even under the best of circumstances I have balance and gait problems.
So far, my neurologist's solution had been to authorize a handicap placard for my car so that I don't have to worry about going down in a remote parking lot somewhere.
Good luck!
Looks a lot like symptoms of ataxia
@keithl56
Like @pauld38 I too thought of ataxia which I believe to be my problem since I have taken multiple seizure medications for 60 years. But my doctor is sending me to a neurologist at Stanford to make sure I don't have multiple sclerosis or muscular dystrophy.
I didn't think in ataxia a person had the paralysis you describe but there are many types of ataxia so who knows. I never have had to wait to get up.
If your doctors figure it out I hope you will let us know.
Take care,
Jake
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1 ReactionI went down twice tonight, once walking through the dunes to the beach (lost my glasses) and a second time on the hard packed sand when I tried to move my chair back from the incoming tide. Second one I hit hard and hit my head and shoulder pretty good, hurting now. I always fall to the right so I think my right leg must just give out. Sometimes I can move my leg right away, sometimes it takes a while.
I wish there was something I could do. It is embarrassing but my friends know and are supportive when I go down.
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