Progressing weakness in legs

fefifofum

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For several months I was getting odd sensations in my left leg - it would get all tingly, go numb, or feel like cold water was running down behind my knee. This was intermittent. I didn't particularly worry until, about two months ago, it started feeling weak. I've now also started experiencing sporadic weakness in my right leg and intermittent weakness in my forearms.

When I say "weakness": my legs muscles shake when standing. I can fully flex both my ankles, but it takes effort to do so. My muscles tire to the point of exhaustion far more rapidly than previously. I think I'd pass a neuro strength exam, and I'm still able to perform my normal activities, but I know myself (I'm an extremely fit and active person) and this is not normal. I've also noticed both my calves and quads on both legs have become tight and crampy, particularly over the past two weeks, even when I haven't worked out.

I've had muscle twitching for over two years at this point, and a year ago was diagnosed with BFS by a neurologist. From reading extensively in this forum, I don't count this as a symptom, but mentioning in case it's relevant.

I've seen my PCP and she's sending me back to neurology, but it's taking a long time due to insurance. Hoping some others may be able to weigh in on whether you experienced anything similar: tingling, progressing to weakness and shaking. While I recognize the sticky note says these aren't concerns, reading through stories on these forums it seems like some others have experienced this progression.

Will provide updates if I find out more (it's been frustrating here reading similar stories but then the person never comes back with the ending!)
 

affected

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Please have a good read here as it addresses your concerns really well, I know you say you have read it, but that is our official position. Reports of fears in this section are not.

Shaking when standing is not clinical weakness. PALS feel normal, they don't feel weak, they are stunned that their body simply will not do what it should. That's great news and shows that what you report is not the least concerning regarding ALS.

We can assure you that the people who post all their fears in this section, then do not return with a final ending did not have ALS.

Please work with your doctor, but stop googling and reading here looking to make your vague, common symptoms fit a rare terminal disease outcome. All the very best.
 

fefifofum

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Thank you! Appreciate it.
 

lgelb

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Benign twitching over a couple of years can take its toll in terms of shakiness and even perceived weakness. If everything else is ruled out, it might signal the possibility of keeping a symptom diary and making more of a systematic effort to correlate what reduces the twitches and what doesn't.

I would continue to keep in touch with your PCP as systemic disease or nutritional imbalance are still possibilities.

Best,
Laurie
 

fefifofum

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Update: Had an EMG of my lower leg on Wednesday, 100% normal results. I'm a little confused why they did only the lower leg when I have weakness in my thigh as well but I assume SOMETHING would have shown up if anything bad was happening, so I'm letting my mind be at peace now. I will keep working with my PCP and stop worrying about ALS.

Thank you to everyone here who took the time and energy to reassure me. It was no small kindness.

For fellow worriers: If you have BFS or twitch a lot, I highly recommend joining the Reddit BFS community. There are lots of people over there who can support emotionally through weird symptoms and can remind you on bad days that what you're experiencing is NOT sinister. When I first got a BFS diagnosis I was given almost NO information about it, but since joining the community, I've learned how many others also experience things like perceived weakness, muscle shaking, and sensory symptoms, WITHOUT it being anything bad.

I also found this article, "The perils of being your own doctor," very helpful when I was spiraling into health anxiety. It tells the story of an experienced doctor who became so anxious that he actually triggered weight loss, full-body weakness, and fasculations. He did not have anything sinister going on but even with his medical training convinced himself that he did.
 

Nikki J

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Thanks for letting us know. Have a long and happy life
 

affected

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thank you and congratulations on being cleared. please stick to your resolve to let ALS go now.
 
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