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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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Wow you’ve been thru a lot more tests than I, but I have had very infrequent total loss of muscular control/buckling of a knee (it’s happened with both) that just happens out of the blue. No pain, no forewarning, very disconcerting! It lasts for a brief period and then I’ll get the knee back functioning. I can’t walk while it’s occurring. I’ve mentioned it to my physicians and they don’t know what it is. I’ve got cerebellar ataxia with vision (nystagmus)) issues that cause dizziness/vertigo, stability and balance issues, tremors and loss of fine motor skills. I’m doing ok with all of that but I had to respond to your post, as it has been confounding and quite frustrating for me. All the best to you in finding your way through all this!
MarkE
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1 Reactionmaddocksm @maddocksm
That awful! Your husband been through a lot of test, so here is another one - measure brain activity EEG.
After my Neurologist tried several tests, the latest is EEG. My brain didn't have any issues during the in hospital test (60min), I'm now scheduled for the Ambulatory EEG 72 hour test - " This lets you go about your normal day while a small recorder tracks brain activity for one or more days."
"An electroencephalogram (EEG) is a non-invasive, painless diagnostic test that records the electrical activity of the brain using small metal discs called electrodes attached to the scalp. The procedure is completely safe, involves no radiation or electricity transmission, and typically lasts between 20 to 60 minutes, though extended monitoring can last up to 72 hours."
Cleveland Clinic has a paper here
https://my.clevelandclinic.org/health/diagnostics/9656-electroencephalogram-eeg
Best Wishes...
🍀
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1 ReactionFirst, you are right. No one here on this connect site can diagnose your husband.
Hopefully someone with the same clinical picture can relate to all your husband's symptoms and offer input that will be helpful. Reading your post it's obvious you are very well informed re: all his testing and physical presentation. It's wonderful he has you - certainly you are a strong advocate for your husband and on "top" of his many health issues.
My feeling is - nothing wrong with posting here - but seems to me your husband's medical work up is very much still in progress and there are no definitive answers...yet.
If the Mayo Clinic can not give you answers, well...not sure what medical facility can.
And as hard as it may be to understand, there are medical conditions (after extensive work ups) whose etiology remains unknown. I hope that will not be the case with your husband.
And should it come to that, you could always transfer his case to another highly rated, top neurological center in the US for another opinion. The Mayo Clinic would certainly understand this (should it happen).
I would look at #1 but perhaps you are there already?
An option: Check out US News and World Report medical center rankings for the top neurological centers in the country - if you are not there already.
Easy to say "be patient", "hang in there" as your husband's medical situation is extensive.
Take it a step at a time.
Your husband's medical/neurological symptoms/presentation is clearly difficult to sort out.
Wishing you and your husband all the very best.
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2 ReactionsThank you for the other resources I will definitely look into them.
@fourleaf Thank you for taking the time to read and give some feedback back! We will definitely request the EEG. Best of luck in your health journey!
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1 Reaction@briarrose I had some similar symptoms. Knee buckle, tongue movement issue with occasional swallowing problem, tingling in extremities, vision shaking, positional vertigo, balance issues, twitching, syncope, heat sensitivity. Most symptoms became more progressive over time. MRIs of brain, cervical spine, lumbar were initially clear then repeated MRIs showed lesions. EMG eliminated some diseases and then a lumbar puncture diagnosed very late stage secondary progressive multiple sclerosis. First symptoms started at age 64 1/2 years. Went through medical tests with neuro-muscular medical centers, neurologists, MD specialists, etc. Mayo Clinic MN accurately diagnosed 4 years later.
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2 ReactionsIm 79, and was diagnosed at 78, 10 months ago with Parkinsons Disease on my first appointment with my Neurologist. I have evey one of your symptoms also, and they started about 20 years ago.
I also have Ishemic heart disease since 2013, and Hypothyroidism since about 2019. I was blaming those for my symptoms until my Neurologist got me informed that they are primarily Parkinsons symptoms.
Bust of luck to you on your journey at Mayo clinic. Hang in there. Barry
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1 ReactionI'm 72 and after 11 years of seeing various specialists, I finally got a positive diagnosis of MSA Type C from a neurologist at UCSF Movement Center. The final clue were biopsies and the Syn-One test from CMD Life Sciences in Scottsdale, AZ. Maybe these tests might be of help to you. Good Luck.
maddocksm @maddocksm, @scottmoon
https://www.ataxia.org/msa-c/
Notice- (scroll down)
Research Pipeline - Therapies in Development for MSA
MSA-C Symptoms
Also, check out the "Resources" and "Get involved" at top of page
https://www.ataxia.org/wp-content/uploads/2019/04/Medications-for-Ataxia.pdf
https://www.ataxia.org/help-develop-new-treatments/
Thank you for taking the time to respond and share this information. I really appreciate your help as we try to understand what’s going on with my husband.