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DPJ1375

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Learn about ALS
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AU
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Sydney
Hi everyone

I am living in the UK.

I have been having some troubling symptoms recently and I was wondering what you might make of them.

It started with unsteadiness in my left leg about a month ago. It feels like there is some kind of deadness to parts of the muscles, but not a loss of sensation. I also felt a of loss in shoulder strength.

Not long after that, I started to have widespread muscle twitches throughout the day, although this seems to have calmed down recently.

I told my PCP I was concerned it could be ALS (it was in the forefront of my mind due to the 'ice bucket' challenge). He tested all my reflexes and strength and said he couldn't find anything and not to worry. As the twitches got worse, I asked him for a referral to a neurologist in London.

The neurologist also carried out the strength and reflex tests (all normal), plus EMG/NCV and loads of blood tests.

The EMG/NCV report states "EMG and NC examination are within normal limits. There is no evidence to suggest myopathy or widespread anterior horn cell disease." It is very brief and doesn't say whether there were any abnormalities whatsoever - I don't know if this is because there weren't any to find or because they were not of clinical significance.

The blood tests were all perfect, apart from Vitamin D (54 - normal range 75 > 100). I am now taking a supplement to correct this.

The neurologist said that everything was ok and that there is no evidence of motor neurone disease. She expects that the symptoms will (hopefully) disappear all on their own. She said twitches are benign.

Following the visit to the neurologist two weeks ago, I have started experiencing large "jerks" on my right hand side and pains in my feet, calves, hands and elbow - I'm not sure I would call them cramps as they are not disabling and are quite brief. Also, I am losing more strenth in my shoulders and in my left forearm (typing is becoming tiring). I experience aching in my muscles and joints after just normal daily activities (not gym workouts or heavy exertion).

I have driven myself crazy trying to figure out what is going on - it doesn't feel like these symptoms are going to go away on their own and are getting worse.

I would have expected the EMG to show signs of lower motor neuron issues - the neurophysiologist examined every limb and also my forehead.

I know that my strength levels don't show clinical weakness, but I am wondering if I might have UMN dominant ALS or PLS (very rare for both, I know). For clarification - I definitely don't want MND.

Do you think there is any merit in having another EMG done in a month or so?

In the meantime, I guess I'll just have to wait and see how things turn out.

Thank you

Damien
 
You had an exam with a neurologist. If you had upper motor neuron issues they would have been detected there. Your ncs/emg report says within normal limits so it was normal. The usual follow up interval for ABNORMAL but not diagnostic EMGs is 6 months ( sometimes 3) so no you don't need another EMG in a month

Your symptoms don't sound like any MND and you have backed that up with normal exam and EMG. Go back to your pcp with an open mind and let him figure it out
 
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Start worrying when the EMG results end with a phrase like: Results of study strongly suggests Amyotrophic Lateral Sclerosis. Clinical correlation is needed.

The neurologist said that everything was ok and that there is no evidence of motor neurone disease. She expects that the symptoms will (hopefully) disappear all on their own. She said twitches are benign.

You had your answer right there...
 
Similar issues here...if your EMG was clean then you have nothing to worry about.
 
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