Symptoms and diagnostic process

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May 14, 2022
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Previous thread here: Potential ALS

Does anyone find this process so disheartening? I cannot believe in this day and age people have to go through what they have to go through to get answers. I'm over 2 years into symptoms and it's turned my life upside down with zero answers. They've went from anxiety/depression to BFS to FND and all of these are incorrect I can put my life on it.

My symptoms which have progressively worsened over this time period:-

Cognitive issues (insight, apathy, memory, executive function etc) alongside personality changes. Also started to become slightly wreckless with money but managed to get that back under control. No matter what I try I can't shift what I can only describe as permanent brain fog
24/7 muscle fasciculations now going back 2 years (legs, arms, face, tongue etc)
Muscle mass loss in left arm (thinner than my right)
Muscle loss in right shoulder
Permanent stiffness (increased tone) in my left bicep (imagine the feeling of a blood pressure monitor)
Awful, awful fatigue that I cannot shift. Worsening over time
Breathing issues (can't take a proper deep breath)
Facial weakness
Elevated heart rate from what my resting heart rate used to be
Neck weakness
Jerking of limbs/muscles. Unsure what other way to describe this
Weakness in left arm, right shoulder
Rigid body in general, very stiff movements

As a person I used to put myself under a lot of stress working 2 jobs, 14 hour days etc. Every day was constant, worked 2 jobs, a very Type A personality. I'm still working one job but struggling but just cannot give it up. Exercise is light now, I can't do anywhere near what I could before. I can't afford to and don't want to while I am still able.

My neurologist recently performed an MRI and an EMG, the MRI was clear apart from a pineal cyst but I was told not to worry about that. EMG was apparently clear apart from it showing fasciculations but it doesn't mean any of this is right or normal.

I'm 32 years old and know my body, i might be young but I know this isn't normal and hasn't been for a long time. I don't suffer from any made up stuff they like to throw your way (depression and anxiety for example). Real serious things, but not what I'm suffering from.

EDIT - neuro noted in the past I had a jaw jerk reflex and brisk reflexes (which makes sense as I'm easily startled now), yet still no further forward.
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I understand you are frustrated, but sometimes there are not answers better than BFS and/or FND, and sometimes "right" and "normal" are a moving target.

That said, some of the features you mention are systemic and so I would return to your GP, someone who can follow you and monitor labs. If appointments are scarce, perhaps an NP or PA could help.

Even if you never tested positive for anything, a postviral syndrome is very possible. We now know that Covid, for example (which has been implicated in many cases of tachycardia of various subtypes, especially POTS), directly infects blood vessels, and can compromise nerve function, any solid organ, and/or circulation as a whole.

Nothing you wrote in 2022 or now makes me think of ALS.
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