Juvenile ALS

[SorchaB]

Hi all , my 17 year old start developing grip problems in one of his hands 18 months ago. At this stage he has very poor hand strength and after many MRIs and nerve conduction studies nothing has shown up and we are being sent to another specialist neurologist. He now has symptoms starting in his other hand. Juvenile als was mentioned but it’s something like 1/100000 incidence rate but maybe we are that one . He has generalised hyper mobility especially in elbow but we were told this has nothing to do with it . He has no pain and sensory hasn’t been affected. Needless to say we are terrified. Has anyone ever come across something like this?
thanks so much

Sorry clicked on wrong photo 😬

In Juvenile ALS muscle wastage occurs before weakness. It is even rarer than the rate you quoted for under 25s 1:1m (it’s more commonly found in over 21s) & even then having loss of grip strength appear bilatery before the rest of the arm is impacted is unusual.

The symptoms you’ve described can come from other serious illnesses like Juvenile Arthritis. But they can also come from other things - eg RSI, infection, severe vitamin D deficiency) and other metabolic causes. My symptoms came from Hashimotos - back when my TSH was in the ‘normal’ range.

So try not to worry and push for further testing - not just neurology.

Hi,
My husband has a condition called ankylosing spondylitis and one of his symptoms is grip issues. He also has severe joint pain and inflammation. He was diagnosed at 30 but actually had symptoms back to his mid teens. He also was diagnosed with hyper mobility as a child.

I think it's good that they are taking this seriously and you are seeing the right people. But like you have said the chances of juvenile ALS are so low and there are a whole multitude of other reasons this could be caused

Sending best wishes

Thank you both. That’s very helpful. I should have mentioned that the nerve conduction indicated it was coming from C7T1 or the nerve C8 but the MRI of cervical spine and one of brachial plexus showed nothing . He also had one of wrist and hand , nothing . He’s having 2 now of elbow and forearm as hand physio feels the problem is from the elbow down. I think they are concerned because there is no pain whatsoever or sensory loss. It started at a time when he was rowing and he had joined the next group up and training was 6 times a week including weights which I wasn’t keen on because he was only 15 at the time . It started by him saying he couldn’t get a grip on the weight. I keep hoping they missed something on the mri .
in any case, thank you again for replying , it’s at least good to talk