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Daniel
25th March 2019, 09:45
Hello All,

I was wondering about muscle loss. I have noticed muscle loss in my arms and hands. I am still waiting on neurology results and have not seen the neurologist since noticing what I believe to be muscle loss. I hope it doesn't cause offence by asking but I was wondering how people noticed their muscle loss, if any with MND. Did the muscle stop working and then occurred or the other way around or both.

Daniel

JAY TEE
25th March 2019, 12:02
Daniel, yes agree there is muscle loss. I formally diagnosed with ALS MND in May 2014 just two days after 65th birthday. Previously always kept myself fit had played lots rugby and had pain in left hip and always assumed to long in front row. I now cannot walk and talk and left arm and left leg not working that well, still enough use for grabbing and being lifted up on sit to stand hoist. I was about 15.8 stone but after 5yrs now 13.8 and muscle loss in left arm left leg. Can still eat as long food mashed up but had food peg fitted 3yrs ago and hardly use it.
Best wishes John

Lynne K
25th March 2019, 12:56
Daniel. John gave a good answer but I thought that I'd add a bit. My right hand fingers are weak and losing dexterity. You can see the loss of muscle in this hand clearly. If I put my hands alongside one another they look like they belong to 2 people. The right is much thinner and gangly looking. The left looks normal. Lynne

nunhead_man
25th March 2019, 16:54
Hi Daniel


Did the muscle stop working and then occurred or the other way around or both.

I am not sure the others have answered your last question and I was not sure if that was important?

In my case I lose the function and then lose the muscle.

So in my case, my left hand stop working properly, about 3 years ago with the thumb and forefinger grip ceasing to work and then gradually the muscles in my forearm and then upper arm have wasted away as a course with no nerve feed muscles simply wither away

I hope you get your diagnosis soon. And of course always come back here for support

Best

Andy

Doug Carpenter
26th March 2019, 17:10
Hi Daniel

That's a perfectly reasonable question - doesn't cause offence in the slightest.

My MND started with my left lower limb - foot drop - which is now completely paralysed. Muscle wastage followed loss of function, rather than the other way round. This sort of makes sense: the nerves die, they don't activate the muscles, the muscles aren't used, so they waste away.

Doug

Gillette
1st April 2019, 10:13
Hi Daniel,

I was diagnosed in November 2019 and lost the ability to walk less than four weeks later. Three months on and I have noticed a considerable loss of muscle in my thighs.

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