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sandra/ca

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Hi All,

I'm 49 and am having nerve problems and now, possible weakness. I wanted to get experienced opinions on my history. Late summer I noticed foot slapping on the right, it went away but came back worse in October and was diagnosed w/foot drop. Neuro EMG testing showed 2+ IA, 3+ Fibs and 3+sharp waves. The NCV studies showed gross abnormalities on F-waves and H-reflex (no response/peroneal).

The neuro was initially convinced I had a spinal problem and then thought I had a virus attacking the sciatic nerve bundle (had no pain whatsoever but some numbness). Even a spinal tap showed up nothing. I know this Doc because he diagnosed me w/carpal tunnel both hands at the beginning of last year. He sent me to a rheumotologist who ran more tests and is looking at connective tissues diseases, including dermatomyositis. He asked me how long I'd had the hand tremors, I'm embarrassed about them and try to hide it. This affects what I'd call fine motor movement. I held a paper out for my husband to take and the whole thing was shaking (he asked why is your hand shaking like that?)

My legs are starting to tremble now and I wonder if it's weakness, i.e., bending at knees and legs shake/quiver from the minor effort. I'm very muscular and thin. My tongue shakes too and I laughed about it at the Doc's office. If I slightly open my mouth, tongue still inside, my whole mouth twitches; even under my eyes. If I hold the position, it occasionally twitches/pulls to the right side. If I "rest" my tongue on my lower lip, protruded a tiny amount, it looks like tiny spasms are there with more activity toward the center of my tongue.

So, I'm hoping for some opinions on why this COULDN'T be ALS-you know, what doesn't "match". I see the Neuro next week. Thanks for listening.
 

siuska

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emg

i am also going through the 'ruling out stuff' and i have to say it takes a brave soul to get through these days...i wish and pray the best
 

mamaoftwo

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If your NCV showed abnormality then I would not be worrying about ALS. Typically with ALS, the EMG is abnormal (needle part) and the NCV is normal. Good luck to you. Many of us know exactly what you are going through.
 

sandra/ca

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nerve

This is exactly what I want to hear, thank you.
 

mamaoftwo

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Sandra - I meant to add that it also sounds like you have a physiological tremor - probably Essential tremor. Anyone in your family had it - grandparents? Interestingly, many people with BFS also present with essential tremor. That would explain your hands. It doesn't sound like a parkinsons tremor as they are not intentional tremors - in other words, a parkinsons tremor is usually improved when the muscle is in use, in essential tremor it is the opposite. So with essential tremor, if you rest your hand on a table, it doesn't shake but as soon as you try to hold a cup or a paper or soemthing, it will shake. Make sense.
 

sandra/ca

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essential tremor

I'm not too worried about my hands (except hard to put on makeup, lol). It's my legs that worry me. If I'm sitting and rest toes on the floor, they physically shake uncontrollably (up and down). But if they are flat on the ground, they don't shake. It's a slight downward pressure that sets it off=that's likely why I first noticed it when I was backing my car out (light pressure on brake). Bending at knee/crouching (like getting a pan) also causes it. Is that weakness or a tremor?
 

Tall John

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Mamaoftwo

I've seen you post the stuff about NCV before. Not sure that's correct.

Even when I was still very strong I had issues in my arms with the NCV. I don't think I EVER had a normal one....
 

mamaoftwo

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Hi John

Maybe someone can correct me if I am wrong but my neuro told me that in the EMG, there are 2 components - the NCV (nerve conduction velocity) and the EMG (needle part of the test).
in ALS, the NCV is normal and the EMG abnormal. This was my understanding from what the neuro told me. Anyone? Is this correct? I don't want to mislead anyone.
 

mamaoftwo

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Sandra
Could the shaking you describe be clonus ? - Try looking it up.
 

sandra/ca

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When I googled clonus, the first site included a video and that is exactly what it looks like. What is clonus from?
 

mamaoftwo

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I believe clonus is indicative of upper motor neuron abnormality but again, check it. None of us on here are doctors. We just do our own homework and try to make sense of what is a very complex medical area. I read that reflexes on the 4+ scale usually present with sustained clonus.
Hope the helps
 
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