8 years of muscle weakness and twitching

[RenaCox]

For 8 years I have had muscle twitching and weakness. Not like where I drop anything or have a dropped foot, but a feeling of muscle fatigue. It's even all over body/ chest/arms/hands/legs not focalized. If I've had atrophy, it's been extremely slow and also evenly distributed. My calves twitch for example both calves same size.

I had an EMG 7 years ago and it came back normal . I'm going to the doctor tomorrow and I'm trying to decided what other tests I could go for. The Neuro that performed the EMG also cleared me of "clinical weakness". I'm not even sure an MND would act this slowly or not? I figured by now I'd be dead but instead same muscle twitching 8 years later with almost same feeling of weakness. I can't tell if weakness has gotten worse or not because it tends to feel the best at start of day, and days I get less sleep feels worst. Not pain, weakness feeling.

Nobody else can see my symptoms, everyone around me it's just life as normal. They don't see anything wrong with me. The weakness I feel doesn't prevent me from going to work or walking. It's all just tiring. I can toe walk, heel walk. I'm not showing functional weakness. Where I simply can't do something. I'm not sure if I should even consider ALS anymore. Thoughts? I feel like all of my muscles are just melting away yet can look down at legs seem muscular still? No throat or face issues swallowing.

 

[KimT]

You should work with your primary care. If you're overweight, malnourished, lack proper electrolytes, dehydrated, hormone imbalanced, thyroid deficient, addicted to caffeine, etc. that could cause you to feel weak.

I see no reason to think any motor neuron disease and you shouldn't go to a doctor's office with any preconceived notion of what tests you should get. That's up to them after they examine you and take your updated medical history.

Good luck.

 

[RenaCox]

Thank you for responding. I seen you in the comments of other posts and was trying to figure out a way to reach out to you since you have good insight so it's ironic you commented! I just had more bloodwork done tonight. He ordered a lot of tests. He checked my reflexes and said they were normal but it was minimal checking. After I posted I did read the intro post as to explaining clinical weakness. For the most part the stories I've read have been true to that but some seem to say they just simply felt weak before loss of function. All this time and I still have all function, if I do have MND it has to be one of the slowest progressing cases on record because it would mean from the start to even 8 years later I still haven't lost function but overall all muscles twitch & lack endurance, like tremble. I'm wondering if it's that way because the healthy muscle left is overworked due to the collateral sprouting (after I researched), I'm not sure it's possible that stage would last this long. I'm just a mess mentally.

 

[lgelb]

When you read stories about "I felt weak and then..." typically there has really been a level of functional impairment that sometimes gets overlooked/under-reported in the face of fatigue that may coincide as someone is instinctively trying to keep doing things.

As you say, no loss of function after 8y certainly does not resemble ALS, and no amount of collateral sprouting is going to change that. I agree with Kim that I would be looking at systemic causes and make sure your labs include endocrine testing, A1c, things like that.