muscle atrophy, fasciculations and EMG question

Monarch528

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Thank you to all who contribute and post in this forum.

I started with atrophy in my left lateral calf muscle about 8 months ago. I noticed a dimple there while shaving that got deeper and deeper. A few months later I was sick with a cold and had fasciculations in my left quad muscle for 3 hours straight. Three months later and there is evidence of muscle atrophy in this quad with a hollowing just above my knee. I now have consistent fasciculations in both calves and feet at rest but also have them in my abs, back, quads, butt, shoulder, triceps randomly. My left arm now feels weak more proximally. My right thenar eminence appears slightly atrophied. Both hand fatigue quickly with repetitive tasks. I have generalized muscle fatigue with exercise and some activities like stairs but not weakness because functionally I can do everything I want to do. My balance and coordination is good and my reflexes were normal when I saw the neurologist so I don't have any evidence of upper motor neuron stuff going on (yet?). I've had many labs done to rule out many things, autoimmune, lymes,

I had an MRI to rule out spinal stenosis or any type of nerve compression. I do have mild degenerative changes through mid to lower lumbar spine and moderate atrophy of my lumbar paraspinals (which I was told can be normal for women with degenerative changes there). I don't have any sensory changes or pain in my left leg so I don't think it's peripheral neuropathy.

I have neck pain that started around the time the muscle atrophy started. Now I have intermittent headaches all day every day.

I saw a neurologist and clearly I need an EMG which I am scheduling.

My questions:
1. What is considered a good quality EMG for MND? From what I've read on here some people have EMGs that aren't thorough enough. They plan to do it on all four limbs. Is there anything else I should be asking the neurologist to be looking at during the EMG? Tongue? Neck? And any advice for someone about to get an EMG? I'm freaked out that they will be sticking all my limbs with needles, dreading this test, please tell me it's tolerably painful and I'll do fine.
2. I've read some PALS posts that say inability to move an arm or leg precedes the atrophy. Has anyone with a known diagnosis of ALS had onset of atrophy and muscle twitches preceding loss of function?
3. Are neck pain and headaches common with ALS?
4. Can onset of symptoms be in all four limbs at once? And (putting the cart ahead of the horse here but...) has rate of progression been linked to any "type" of onset?

Thank you thank you to anyone who has any words of wisdom for me.
 

affected

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1. In truth, your best strategy is to let your neurologist decide what muscles to test and what tests to order and how to proceed.
Advice - don't put creams all over your skin, and go with an open mind. Why are you so worked up?
2. no
3. no
4. highly unlikely

Just get the test and ask your neurologist to explain the results in light of your clinical examination.
All these feelings and fatigue are not indicative of ALS.

I'd suggest you read this post really carefully, a couple of read throughs is a good idea as you won't take it all in first go.
Then just let your highly trained doctors work this through. I know that is hard, but honestly it is the best approach.
 

Nikki J

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Definitely do not use lotion or cream on the day. Oddly it makes it hurt more. I have had many emgs. Mostly for genetic studies. They are not that bad if you are calm. Not fun but in the grand scheme of things not that big a deal.
how much should be done? Those not thorough enough posts are usually if not always the opinion of an anxious poster who doesn’t believe the doctor saying no ALS.

often an als screen is one sided leg arm, paravertebrals and maybe the upper trap or sternocleidomastoid for bulbar. But as you are reporting symptoms in many areas honestly they would see ALS without doing that much if it were ALS

i should add you may not get results at the time if another doctor does the emg. Do not read anything into that. Also emgs can be abnormal in many ways so you need your doctor to explain results and then you need to believe them
 

Monarch528

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Thank you for your opinion & advice. I have a family history of ALS so Im hyper-sensitive and its very scary to see your muscles shrink in the absence of pain or numbness.
 

affected

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I'm so sorry you have family history. Would you expand on that for us as it would be quite important information.
 

Monarch528

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My grandmother was diagnosed when she was 70 with bulbar onset. They said it was a sporadic case but that was over 20 years ago. She lived 1.5 years after diagnosis.
 

Nikki J

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70 is old for FALS. Also relevant is the status of your intervening parent.
I hope you get your emg soon so you can have your answer
 

affected

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thanks for replying. A grandmother with ALS doesn't make you any more likely to develop ALS yourself. When ALS is familial, the family knows it as there are multiple cases happening.
I also hope you get the EMG soon.
 
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