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Lukarelli

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Feb 8, 2020
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Learn about ALS
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Country
UK
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City
London
Hello there,

Since Christmas I’ve been experiencing some peculiar symptoms. It began with leg cramps/stiffness and some hand numbness/ tingling. Fasciculations started shortly after.

I saw my local doctor about a week after this started - he did basic strength (they seem very basic for a 32yo!) and reflex tests, all
Ok. Ordered blood work- all fine.

Any numbness/tingling in the hands quickly subsided replaced with just aches and stiffness in hands/wrists and fingers. Leg issues continued, feet very quick to lose feeling in cold weather and taking hours to regain feeling which has been concerning.
Fasciculations have escalated, all over body every minute of the day - most frequent in legs, particularly the calf’s. Very visible. These lead to Myoclonic jerks at night and sleep disruption.
Currently I have a shaking/tremor in my left arm, noticeable when there’s pressure on my elbow(sitting at a table) and my left leg is stiff as a post, twitching is constant. Muscle aches, left arm and hand don’t feel right. I’ve also woken up in the night a couple of times struggling to catch my breath- having to take very deep breaths to do so- this continuing throughout the day. During this period I’ve been prescribed Propanol and Amitriptyline, both of which have had no affect.
In my most recent Doctor visit I was referred to a neurologist as she saw the visible twitching in my legs. She also performed basic strength tests on my legs - fine.
I’m based in the UK, so I’m likely to be waiting 4-6 weeks for my neurologist appointment.
Any insight, advice and opinions would be greatly appreciated.
Apologies for my poor uneducated articulation.

Thanks
 
Please read this if you have not already done so:

You’re not describing ALS. Aches, shaking, numbness, myoclonic jerking, and extremities “not feeling right” have nothing to do with ALS. And a neurologist determining that your strength is normal really points away from it.

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described.

So whatever you have going on is not ALS. Hopefully the neurologist can help get to the bottom of things, but you don’t need to be on an ALS forum.
 
If the beta blocker and TCA are not helping, I would titrate off with the help of your GP -- they both have side effects you might not do well with.

I would also ask the neurologist about a sleep study.
 
Thank you for the responses and advice.

I’m yet to see a Neurologist- just been referred by my GP-an appointment is likely to take 4-6weeks.

My left hand and arm is weaker and more uncoordinated than my right side, the twitching is worse there also. I’ll bring these concerns up at my appointment. I haven’t had any numbness or tingling symptoms for a few weeks.
 
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