Old 06-13-2018, 01:41 PM #1 (permalink)
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Default Twitches, cogwheel motion, fatigue, breathlessness, loss of muscle mass

Hi,

I was just wondering if anyone here had experienced similar symptoms to what I have and have managed to receive a diagnosis for their condition.

Approximately 3 years ago, I started noticing tremor on my left hand. I had difficulty holding my phone still to take pictures. At the same time, I started feeling really lethargic and shortness of breath. I was working out regularly and would consider myself a reasonably fit individual prior to these symptoms. However, when these symptoms started, I was so tired that I had to stop working out, and my heart felt like it couldn't take any form of workload.

I then started noticing this cogwheel movement on my calves when I tried doing seated calf raises. I have since noticed that any form of weight bearing activity on my muscles would result in a jerky movement and an inability to smoothly control my motion.

My muscles now burn with even very basic activity like walking up a flight of stairs etc. And I have noticed that my muscles are now gradually becoming very soft and flaccid and sinewy.

I have had most every major test done in the past 3 years, from EMGs to MRI to blood tests etc.

What I know is that I'm really struggling to function normally as most basic activities these days would result in my muscles burning like they've been worked for ages, and my heart would be beating very rapidly Android extremely short of breath.

Can anybody with similar symptoms help? Thank you very much in advance for all your assistance.
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Old 06-13-2018, 02:15 PM #2 (permalink)
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Default Re: Twitches, cogwheel motion, fatigue, breathlessness, loss of muscle mass

Was your EMG normal? If you had ALS, your EMG would not be normal and would show a specific pattern. If your EMG is normal, continue to work with your doctor. If your EMG is not normal, you are welcome to upload it and we will make comments.
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Old 06-13-2018, 06:46 PM #3 (permalink)
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Default Re: Twitches, cogwheel motion, fatigue, breathlessness, loss of muscle mass

Cranberry, I can't pretend to diagnose you, but I can note that the picture would seem to exclude ALS. If you have issues with all your large (and small?) muscles in the sense of fatigue/flaccidity, I would certainly seek a second opinion, though the heart/breathing issues lead me to suspect something systemic rather than neurological. I'm sure Tillie can mention a center or two.

Best,
Laurie
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Old 06-14-2018, 03:18 AM #4 (permalink)
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Default Re: Twitches, cogwheel motion, fatigue, breathlessness, loss of muscle mass

I'm a long way from Melbourne, Far Northern NSW.

I don't see anything there of what your doctor has said about your symptoms?

If you want to see a neurologist start here at MND VIC, they can advise you. I know Bethlehem have an MND clinic, but no idea how close you are to there.

https://www.mnd.asn.au/
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