Twitching, large quad dent, passed EMG tests, early ALS?

DNC85

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I'm a 36 year old father of three beautiful children under the age of 4. I'm married to an amazing woman and I am a fulltime firefighter. The reason I am here is that I'm worried that I may have ALS.

3 months ago I woke up in the middle of the night and my legs were twitching like crazy. The twitching has spread all over at this point and now I feel exhausted and weak every day and so I've been off work for 2 months. I've also got pain in my left foot now and I feel lop sided and kind of lean to the right more as I walk. In the past few weeks I've felt shortness of breath and a slight difficulty swallowing liquids.

I've seen two neurologists and had two clean EMG and nerve conduction tests in the last 2 months. The neurologists have both said they can't find any neuropathy to diagnose at this point.

This all started in spring 2020 I noticed a weird indentation in my left quad muscle and since then it has become much deeper and obvious. There was never any real pain associated with it and there was never any injury to cause damage to the muscle. I didn't see a doctor about it until june 2021 and he said its just an old muscle tear that keeps getting bigger. I had a second doctor look at it and take an ultrasound and he said there appears to be some trauma to the muscle and there is granulation. I'm worried that is muscle wasting or focal atrophy that caused the muscle to tear.

At this point the doctors have basically said I just have a muscle tear and the rest of my symptoms are likely just caused by anxiety. I assure you they are not caused by anxiety and are very real.

Has anyone ever had any similar experiences?

Please if you have any helpful information I'd appreciate it. Thank you and God bless
 

Nikki J

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if you were examined by two neurologists and they said your exam was normal and you had 2 normal emgs then ALS has been ruled out. The exam would detect upper motor neuron disease and also findings that would support any lower motor neuron disease seen on emg. Since ALS is a disease of upper and lower motor neurons and you have no clinical evidence of either you need to look elsewhere for causes of your symptoms. You apparently have a diagnosed injury to your leg. Of course your symptoms are real but your emgs and 2 neurologists say not ALS. Please continue to work with your doctor to address your new symptoms

FWIW your experience sounds nothing like mine or that of my family but has similarity to the stories of a number of people who have posted in this subforum without returning with a diagnosis of ALS

good luck
 

DNC85

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Thank you for your reply. The thing is my symptoms have changed and progressed since my neurologist appointments. At the first appointment I was still working as a firefighter and felt relatively normal and strong. I didn't have any respiratory or swallowing complaints, just the twitching. Now my leg muscles feel weak around my knees and I have this fatigue that makes me want to lay down through out the day.

Do people pass an EMG on one day while experiencing symptoms and then fail later on? What else could possibly cause my symptoms?
 

Nikki J

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You are theorizing that you had one cause of your symptoms originally so had a normal emg and exam and then later developed ALS which seems unlikely to say the least. Of course everyone with ALS would have had a normal emg before the disease started but most people don’t get emgs done. Also people with upper motor neuron onset have normal emgs at first BUT their exams were not normal as umn disease is found on clinical exam

there are thousands of things that can go wrong with the human body. That is why I said to work with your doctor. It is not our place to theorize about possible diagnoses
 

Clearwater AL

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DNC... just a suggestion..

"I've seen two neurologists and had two clean EMG and nerve conduction tests in the last 2 months.
The neurologists have both said they can't find any neuropathy to diagnose at this point."

Key words... "in the last 2 months."

That's great news. I'd scratch ALS off the your list. Hope your doctors get you back to a
good healthy life.

(How many here would have loved to get that news.)

Best wishes on your road along to diagnosis... and cure or treatment.
 

lgelb

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I would ask about a physical therapy evaluation to help get your leg as strong as it can be. Old injuries can take their toll, especially if you didn't get PT at the time.

The good news -- there is no reason to think further about ALS.

Best,
Laurie
 

DNC85

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Since my last neurologist appointment I am certain that I've been losing muscle in both my legs especially in my quads. It is getting more obvious to the naked eye that I've been losing muscle which the neurologist couldn't really tell just by looking at my last appointment. My right leg wouldn't be affected by a muscle tear in my left leg and yet my right quad has been shrinking in certain areas as well as my left leg. I've had lots of unusual pain in both my knees and back for the past month as they feel much weaker lately. I'm also experiencing strange pain in my muscles after doing simple exercise like going for a walk. I believe this is muscle wasting/atrophy affecting my muscles. Do you have any information about what people experience when muscle wasting occurs? Just to note my ck level was 390 about a month ago when I had a blood test.
 

Nikki J

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all we can say is go back to your doctor.
 

DNC85

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I have an appointment in a couple weeks with my doctor.

Please, if anyone has any information about what muscle wasting/atrophy feels like in their experience early on in progression, I would really appreciate any information you or anyone would be willing to share. Thank you so much for your time and God bless you all.

Sincerely appreciated,
Daniel
 

Nikki J

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I had significant clinical weakness months ( almost a year) before any atrophy. I am slow progressing but my sister who was classic progression also had a number of months after clinical weakness before atrophy. In both of our cases our first sign was failure of one task ( hers was doing up a button) and there was/ is no feeling associated with the atrophy
 

DNC85

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This message is only for diagnosed PALS. Please, if anyone has any information about what muscle wasting/atrophy feels like in their experience EARLY on in progression, I would really appreciate any information anyone would be willing to share. How do your muscles respond to excercise? Do you feel strange pains in your affected muscles? Do you develop dips or dents in your muscles?

Thank you so much for your time and God bless you all.

Sincerely appreciated,
Daniel

Thank you so much Nikki for sharing. I am very appreciative of your time and attention. I've started a new thread on the topic to just see if anyone else is willing to share as well. I hope you don't mind.

Once again thank you

God bless you
Daniel
 

Nikki J

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You are not allowed to post in the general forum and you are only allowed one thread in the cihals subforum if you are undiagnosed. Most PALS choose not to answer cihals because it is distressing to them the posting rules are in the read before posting sticky
 

DNC85

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My apologies, I thought I was allowed more than one thread if I joined as a supporter.
 

DNC85

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Please, if anyone has any information about what muscle wasting/atrophy feels like in their experience EARLY on in progression, I would really appreciate any information anyone would be willing to share. How do your muscles respond to excercise? Do you feel strange pains in your affected muscles? Do you develop dips or dents in your muscles?

Thank you so much for your time and God bless you all.

Sincerely appreciated,
Daniel
 

Clearwater AL

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DNC85... you are asking questions that only feed to this "Could this be ALS" forum
later by others.

You joined July of this year, you've had plenty of time to review the numerous threads
and posts. If not... take the time to do so. (Your BIO... "Learn about ALS).

But... not saying someone, or more, may reply with their lengthy testimonial(s) which
couldn't be in just a few words of the questions you ask.

Just being direct. Thank you for donating.
 
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