Does this rule or ALS?

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Gardenerforlife

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Hello.
First of all, THANK YOU for being here, and being so generous with your expertise.
I posted before but the tread has closed.
Thread 'Differential Diagnosis Without MRI?'
Differential Diagnosis Without MRI?

Long story short—about 6 months ago I went to pc doc because of weakness in left leg. She sent me to a neurologist, who ordered MRIs but I thought could not get them because of metal implant. eventually I was able to get MRIs that did not show any cause. I was referred to a neurophysiologist who noted leg atrophy, an inability to stand on heals, and absent ankle pulse but otherwise all was normal. She sent me to PT who sent me back to neurologist. Neurologist sent me for an EMG of problem leg.

Unfortunately, I can’t download the report for posting, but basically the nerve conduction test was normal as were all the leg muscles tested except the gastrocnemius, which showed acute and chronic denervation. IA is increased, fib 2+, PSW 2+, no fasciculatuons, amp increased and recruitment slightly reduced.

Given that I have no fasciculatuons and the atrophy and denervation is limited to one muscle, can ALS be ruled out?

Thank you in advance.

Sorry. I meant absent ankle reflex—not pulse.
 
Can you take a pic of the report and post that?
 
I think I figured out how to download.
 

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I agree that the interpretation is, definitely not ALS. I would pay attention to how you sit, uncross your legs/ankles, make sure all your seating surfaces and bed are supportive but not too firm.

Is it correct that you are really 70 inches and 124#? That's pretty skinny and has me wondering about nutrition and all that goes with it, as well as pressure points in your positioning.
 
Thank you for validating. Yes, the weight and height are accurate. I am scrawny. Always have been. Always will be.

Sadly, the saga continues. I may think I am a run of the mill homo sapien but I am, in fact, a ping pong ball being swatted from one specialist to another.

Bear with me this is a bit long.

Neurologist ordered PT and follow up in 3 months. All good. I am convinced that PT will fix the pesky leg that has been preventing me from biking up steep hills or hiking the distances I’m accustomed to. So off to PT I go.

Well the PT may be the rudest person I ever met. She confirms leg atrophy and says I have a steppage gait, but she refused to give me PT. She said that she is there to rehabilitate, not to give someone shapely legs. Seriously. She actually said that.

So I email neurologist asking what to do. She says that PT really is the best option so I should insist on it. But she also refers me to a physiacist. So I’m hoping the physicalist can get me get some PT.

Physiatrist looks me over, confirms what everyone knows. My left leg is even skinnier than the right. He also noticed my right hand has some atrophy. I thought it felt weaker but convinced myself it was in my head. He asked about swallowing, no problem there (thankfully) and asked about voice changes. I have noticed it sounds a bit shakier to me, but a chalked that up to my essential tremor.

He orders a peripheral vascular test to rule out other things and says he’ll call my neurologist. He was no help on PT.

So off I go on my not-so-merry and way determined to get me some PT if it kills me. I schedule a call with my primary doctor to ask for her help bypassing insane scheduling system for PT.

But then I see the physiatrist notes: “concern for motor neuron disease.”

I thought the EMG ruled that out!? Could it really be MND? Does a little atrophy in one hand and a slightly shaky voice really change the clinical picture that much? Couldn’t the denervation in leg be some flukey localized thing, the hand thing carpal tunnel or just overuse f on obsessive iPhone scrolling, and the voice just another pesky sign of the essential tremor? Do I really need to worry about this?
 
The PT sounds like a jerk. It is hard to know about the physiatrist. There are some who have a very strong neuro background but others who are focused on pain or sports medicine. What their rationale for questioning MND is we can’t say- it could be based on so,ething in your exam or it could be some knee jerk response

Of course you could have multiple unrelated issues. A shaking voice is not an ALS symptom but definitely can go along with tremor

Your pcp should be getting notes from your visits. If they are a good pcp they should be able to help you sort through this. Make an inperson appointment and say it is to review your tests and consluts it sounds like you may hear from the neuro too if the physiatrist called them
 
I would expect something else in the notes, like "Given X, concern for..." So don't really know how much current or well-founded concern there is. You are free to ask, even through your portal if applicable.

Of course, denervation ≠ ALS, nor atrophy, nor a voice tremor. Still, if the hand thing is new, that is somewhat notable.

I agree with Nikki that you need to close some loops -- there is info in your records that we simply don't have.

Given the absent ankle pulse, the PVD testing, which, of course, has nothing to do with ALS, is certainly appropriate. Is that happening soon?
 
Thank you for the quick responses. I have video call with primary care tomorrow. Not as good as in person, but at least she can go over the notes.

This is the full context of the mnd comment:

Patient with painless weakness and atrophy now involving the right hand (APB) could be carpal tunnel but does not have any signs or symptoms of numbness or tingling which is the hallmark for carpal tunnel. Concern for possible motor neuron disorder in the setting of also having dysphonia. Denies any dysphagia. Will message Neurology for further evaluation. Will give patient carpal tunnel splint.

I’m not sure where he got dysphonia. I said it shook, not that it’s hoarse.
 
@lgelb and @Nikki J, I realized I never answered your questions but when I went back to respond I was locked out. I meant to say no ankle reflex, not pulse. Vascular investigation is definitely warranted, though, given that I have an extreme version of familial hypercholesterolemia that necessitated the placement of an abdominal stent in my early 30s (which also slowed down getting an MRI). Since then treatment has come a long way and through a miracle of medicine my good cholesterol is actually higher than the bad. I am closely monitored and there is no sign of blockage to date.

Vascular study is scheduled for the 19th of June. I never dreamed I would say this, but I’d be delighted if they found a blocked vessel. Still, I really don’t think this is vascular. I know what claudication feels like and I don’t have it. There is no pain, numbness or cramping. Just muscle weakness, atrophy and fatigue. And the pulses in my feet are bounding. I would think they’d be diminished if I had a vascular issue in that leg.

I tried my PC as you suggested. She wasn’t much help. I asked directly if motor neuron disease was really on the the table and she stammered and hemmed and hawed and didn’t really answer, just talked vaguely about motor neurons and nerve pathways before finally admitting she doesn’t have much experience managing motor neuron disease.

Meanwhile, my neurologist referred me for a complete EMG/NCS but I could not get in until August 20th. Bummer. I asked to be placed on the list for an earlier appointment if available. It seems a long time to wait with something like this hanging over your head. I will deal with whatever it is, I just want to know what it is I’m dealing with.

I do feel my leg is getting worse. I went for a lunchtime walk with a colleague and she asked why I was limping. I didn’t realize I was, but I guess I am a bit. It always feels like the left leg is slower than the right. And I’ve been a bit wobbly defending stairs for months now, but just lately I find myself using the handrail to pull myself up the stairs. I can still lift things with my right hand but the thumb is definitely weak. Without even realizing it I think I’ve been relying on my non-dominant left hand to do things like lift a milk carton or open jars.

My first EMG was limited to my left leg and one muscle in my right leg. I’m guessing a fuller EMG test with additional body parts, including the right hand with atrophy and weakness and perhaps other regions will be able to rule motor neuron disease in or out? I hope so. Limbo is no fun.
 
Update: As I expected, vascular study was completely normal. I got EMG moved to July 23. Still a long wait but I’ll take it. I did see in my portal that my neurologist ordered the EMG/NCS to evaluate for motor neuron disease.” Based on the info you all provided, I just don’t think it’s MND. I have muscle weakness, not failure. And besides my left leg and right thumb, I feel perfectly fine. Good even. I would think by now I’d be more symptomatic.

Thank you again for your wise guidance. It has helped keep me from freaking out.
 
I wanted to circle back to @lgelb and @Nikki J. Thank you again for your sound advice. I had a second EMG/NCS of left leg, plus the right arm which was not done before. Continued denervation in gastrocnemius and now in the first dorsal interosseous. But this time there were some nerve abnormalities. So I am pretty sure this EMG definitely rules out MND. I truly appreciate the time/effort you take for people like me. Bless you both.
 
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