Als , can you help re my early symptoms.

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Oxman

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Hi.

I have constant faint fasciculations in both calf muscles and left arm bicep and forearm and possible occasional twitch in other bicep.

First noticed when up the gym on the cross trainer and got tightness in back of left knee.

Looked on internet re als and one doctor said wait 2 months and see if they go or what changes.

Real fear comes from the fact I watched my mother die from als about 4 years ago. She was 63/64 when diagnosed and died 3 years later. I am 50, so familial als is my thinking and I am the right age. My mother’s sister also died early in a care home from dementia/Parkinson’s/als type illness, not sure they ever got a proper diagnosis.

So since my awareness of the fasciculations, they continue as they were, but l have also noticed the gradual onset of left shoulder tightness, occasional left bicep and forearm ache pain and most noticeably left hand thumb pains especially when I rotate it or move it touch my little finger. The other very noticeable thing is most of my joints have started to make a crackle sound but more pronounced on left side , especially the arm/ elbow again. Have others experienced this thumb issue and obvious joint crackle as early symptoms.

Not aware I’ve lost obvious muscle or strength , though I have stopped using the gym. Also as a regular squash player and playing with my teenage son I now feel slow , aching and very inflexible, I know something is not as it was.

Anyway I believe this arm pain, tightness/discomfort and joint ache/crackling can come before any muscle weakness in some cases of als. Is that true, as I guess to date I might perceive some weakness but no real evidence/example of clinical weakness. What I am definitely experiencing though is the stiffness and ache in muscles again more left hand side in the mornings when I wake and the thumb hand pain. Wish I had found out more from my mum, l know she had foot drop but she also never really wanted to talk or discuss als but that was her way.

Realise I will need to visit my doctor and have tests to be sure , but rightly or wrongly obviously fear the worst having seen what my mum went through. Just keen to hear if others can relate to my early symptoms. I know more about what happens latter down the line unfortunately so any reply greatly appreciated.

Nigel
 

Oxman

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Apologies, have read the note to read before posting now and it makes it clear I should have very real clinical weakness to have als which I don’t seem to. That said other peoples als stories I have read made progressive weakness/stiffness seem a possibie scenario with als and I thought maybe that was me. Still fear it could be but I will carry on , something is going on and I will visit my doctor and see if things look clearer in another month or two. God bless.
 

affected

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You are right - no indication whatsoever of ALS in what you describe - this is great news :)
 

Oxman

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On reflection , reading personal stories from the als association online and elsewhere a good number include twitching as one of their first symptoms with perhaps some stiffness/spasticity and developing / gradual onset weakness as in the hands for example going forwards. At the time this might not be defined as clinical weakness as in many cases they could still do things for a while but als is what they had. I obviously fear this is what I think I am experiencing especially with my hands. Perhaps only time will provide the diagnosis or I just can’t let go of my current anxiety - though I am trying to stay rational and will be seeing the doc soon. But, sorry but does this not conflict with the notes you should read before posting or have I got things wrong. Help appreciated.
 

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No, you were more right the first time around, Nigel. Sorry to hear about your mum.

The "personal stories" of which you speak can reflect poor recall, as well as an emotional bias that I will not attempt to parse. Twitching alone without functional impairment is not of concern, and more than a decade between your current age and your mum's onset is also reassuring. If her ALS were familial, we would expect other family members to have been affected, as well.

Pain, tightness and crackling suggest a new stretching regimen morning and night could help, and bodywork such as tai chi, Pilates, ballet, swimming, etc. before concluding there is something systematically wrong. But of course, I am sure that seeing your doc will be reassuring as well.

Best,
Laurie
 

affected

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I respectfully say that perhaps it is time to find a forum for people with undiagnosed health issues and debate there. Please understand some of our members are operating their computers with their eyes and breathing with the assistance of machinery. It is not appropriate for you to suggest you know better than those of us that have been dealing with this, personally, for years. All the very best as your doctors get to the bottom of what is wrong, but it sure as chips ain't ALS.
 
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