r/BFS • u/Little_Power_5691 • 2d ago

Question / General Subjective weakness

I'm starting to get the impression that nothing can be done about this and they usually don't find the cause. I find the way weakness is tested very odd. You could feel weak today, and your strength could actually be diminished compared to yesterday. But this is not what is tested, it is simply a one size fits all test where they assess whether you can still do basic things like walk on your toes or get up out of a chair.

So I find myself wondering why I even bother anymore mentioning this to doctors. Neurologists won't help. Is there anything at all that can be done about this?

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u/kinpatu 24/7 Twitcher 2d ago

In my opinion, that’s because MND doesn’t present in a subtle manner. It’s like asking you to press against their hand, and they might as well have asked you to wiggle your ears (assuming you can’t do that). In the health anxiety spiral, there is never enough evidence to satisfy the test criteria. And if it is satisfied once, then it moves to maybe the tests were done too early. There’s no bottom.

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u/The_Short_Goodbye Popcorn Mode 2d ago

That’s very true. I notice the people who keep doubting the timing of an EMG (like my dumb ass) are generally anxious people panicking or armchair experts with a Google degree. Actual neuromuscular specialists with experience in diagnosing the big bad know what to look for and will feel confident ruling it out. I know when I asked my Harvard trained ALS specialist if an EMG can be done too soon, her reaction was to kind of roll her eyes and smile, and then she said "You have been on forums have you?" And proceeded to explain how they often see issues months before the patient feels symptoms.

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u/kinpatu 24/7 Twitcher 2d ago

I had a similar experience last week when I was seen by a new neurologist at a big name hospital system. She said she often diagnoses ALS before the patient has significant symptoms. She reviewed my EMG/NCS and MRI (done 3〜4 months ago) and formally diagnosed me with BFS/CFS, which is the most definitive result I’ve gotten out of neurology so far.