ALS versus Spine issues

Melv

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I’m a 58 year old male and I’ve been having constant twitching in both calf muscles for the past 11 months. I haven’t noticed any weakness, and I read the forum alert stating that twitching alone doesn’t mean ALS.

Today, I went to see a neurologist who specializes in movement disorders. She said that I have hyper leg reflexes and clonus on the right foot area. I’m scheduled now to get an EMG, and MRI’s of the upper and lower spine. I have a large central disc herniation (L5/S1) along with severe stenosis from the disc pressing in on the nerve (diagnosed 2015). Also, cervical spine issues diagnosed in 2018 that were more mild at the time.

When I asked the neurologist about ALS she didn’t think I had the disease, but couldn’t total rule it out and admitted she wasn’t an ALS expert. She put on the EMG order, “please evaluate to r/o ALS versus radiculopathy”. Also, she stated that my reflex’s from the neck up were fine with no tongue twitching. She also mentioned the 11 months of twitching without something more happening.

To say that I’m scared now is an understatement. Can spine issues cause twitching, clonus, and hyper reflexes? Thank you for any input on this and have a nice day.
 

lgelb

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Yes, they can. I would expect the test to be reassuring, though the spine issues may need attention.
 

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What we find is that people who go to the neurologist with an open mind, allow the doctor to do what is needed to find out what is going on. People who start asking, but could this be ALS put the doctor in a sticky spot. If they don't then make sure they rule it out they are not doing due diligence, even though they tell you that ALS is not in the picture.
What then happens, and we see this here so often, is the person then comes home and spins into a state of anxiety because maybe they do have ALS and now they have to wait for testing.
If you had not pushed this, the neurologist would not have written anything - that was for your peace of mind, but of course it causes the opposite.

So please just step back a little, take a breath, and let your doctors do their job by following what their medical training indicates to them, rather than taking them along tangents that your fears indicate.

I hope you can do that for your own sake, and please do let us know the outcome of the tests. All the best to you.
 

Melv

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Thank you for your response. Sadly, we sometimes let anxiety block logical thinking. After 11 months of both of my calf muscles twitching 24/7, the neurologist never mentioned atrophy or weakness. I can still do everything physically that I did before the twitching started. Stepping back from the anxiety, that doesn’t follow the path that is talked about in your alert before you post. What is clear via past MRI’s is that I do have spine issues that will need to be addressed most likely. Have a nice night.
 

Melv

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My EMG/NCV is coming up and I’m starting to get nervous again. I understand that my fears of ALS probably put the neurologist in an awkward situation needing to rule out this disease. Yet, my exam was abnormal in some areas. My question is do they list differently diagnosis in order from number “1” being the most obvious cause of symptoms? Thank you for any help and I’m sorry to post again.

Motor:
Normal bulk, No muscle atrophy. Left calf muscles fasciculations. Mildly increased muscle tone lower extremities. Motor strength 5/5 in all areas tested. No bradykinesia. No pronator drift. Minimal postural tremor. No other abnormal movements.

Reflexes:
Deep tendon reflexes are 3+ bilaterally in UE's. 4+ at the knees and right ankle, crossed adduction, 4 beats of clonus on the right. 2+ left ankle jerk with no clonus. No Hoffmann sign elicited. No palmomental or glabellar responses. Plantar response is mute bilaterally. Absent abdominal reflexes.

Assessment and Plan:

58-year-old man with a long history of back problems who presented today with 11 month history of fasciculations in both lower extremities more on the left. The fasciculations started mainly after he sustained a fall which exacerbated his back pain. He was worried about ALS after he read about causes of fasciculations on than an Internet.

His back pain started about 9 years ago with on and off periods of pain and numbness. It was aggravated by a recent fall after which he started having fasciculations in bilateral calf muscles more on the left. His history does not reveal any other major symptoms suggestive of ALS. His exam reveals pyramidal signs with hyperreflexia clonus but mute plantar responses. NO bulbar or UE signs except for 3+ reflexes. Considering all that he does have some LMN and UMN signs. He also has history of cervical disc disease.

Differential diagnosis includes
1. Lumbar spine disc disease causing radiculopathy, leading to fasciculations, decreased left ankle jerk.
2. Cervical disc disease causing myelopathy.
3. Copper deficiency which can cause UM and LMN signs. His B12 was normal lately.
4. ALS: it's not high on my differential but it needs to be ruled out. His symptoms are not progressive, were mainly aggravated by recent fall.
5. Infectious disease: HIV, Lyme disease,
 

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it looks like that list is in order of their highest suspicions to their lowest.
Just try to take care of yourself and post back once you have the EMG results. I hope you are prepared to believe the EMG as the doctor is only looking at ruling it out because you are bringing it to them. This often wastes diagnostic time.
 

Melv

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Thank you for responding back. Yes, I will believe the EMG/NCV results especially after 11 months of twitching with no clinical weakness found by a neurologist. You would think that weakness would show up after that many months even in rare presentations of ALS.
 

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Weakness would show up first, not after many months, it is the hallmark symptom, twitching may or may not be present and is not the concerning factor in any way. Do post the result and take as much care of yourself as you can until then.
 

Melv

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I did my EMG/NCV yesterday. My wife works with the doctor who did the procedure at the hospital and he is very good. He filled me in on everything. No ALS or neuropathy just chronic S1 spine issues causing both calf muscles to twitch for months. Sadly, I see so many people concerned with ALS (like me), but anxiety seems to be the enemy and “Dr. Google”. The same on the BFS forum board. I want to personally thank all of the experts on this board who helped me get through a rough time. Yes, no weakness and a clean EMG equals no ALS. In my case it wasn’t clean, but no “spontaneous” bad things seen during the procedure. Again, the doctor performing the procedure yesterday repeated you wouldn’t go 11 months twitching with no weakness and have ALS. Interestingly, the doctor mentioned his hand twitching years ago and knowledge can be a bad thing sometimes. Twitching is very common in our society and most of the time it’s benign or can be explained by other things going on. My heart goes out to all of the people and family members dealing with ALS.
 
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