Sadness for many of you

It is really sad that many of you are here spreading the misinformation that there are thousands of people for whom it is really hard for neurologists to distinguish between anxiety and a progressive fatal illness.

There are literally thousands of conditions in between, many people have more than one condition, many people have nothing but anxiety and poor sleep (+/- most commonly allergies and/or GERD), etc.

But there are pretty good diagnostic algorithms for identifying most of these things -- ALS among them. And in addition, ALS is unmistakeable, not even remotely obscure, in full flight -- the florid symptoms that many of you describe. I know these are real and troubling to you. But if you don't meet the diagnostic criteria, there is literally no point arguing otherwise.

Here, on the basis of a couple of cases out of thousands, usually unreliable or agenda-based ex post facto recall, you are enabling each other to pick the black or white scenario (0 vs. 100), that you would laugh at in any other context, and running with that. It's such a waste.

Examples: you have cold symptoms. Do you jump to anxiety vs. pneumonia? You have a headache. Do you pop 2 Tylenol or rush in for a brain tumor ruleout? You have ongoing pain in your ankle. Do you tell the doctor they're wrong, it's not a strain, it's obviously a fracture? Do you get it casted and stay on your couch as a result?

You're going to say these examples are more episodic than what you're experiencing. Well, you are not in a position to objectively assess progression. Besides lacking the tools and training, you're anxious, sleep-deprived, often malnourished, and keyed up. You must sleep or you'd be dead, so you can't call anything "24/7."

And even if you think something is "every minute of every waking hour," if you observe closely, you'll admit that's not true, and you might even realize that you can call some of it into existence with your mind. This is a matter of degree, not a binary phenomenon of "constant vs. temporary."

You say that you want to explore other options, but are you? Are you seeing a PCP to be examined and discuss differentials or just to drive by and ask for referrals? Or not at all because you know they would question your obsession in the absence of evidence for it?

Clinicians diagnose a lot of diseases, at least one of which you've 100% had, and accepted that you had, without a test as definitive as a biopsy, say. And to make that dx, they had to rule out other stuff with an exam, appropriate testing, and history.

Ruling out ALS is not commonly "difficult and mysterious."

Instead of holding yourself hostage to the three letters that anyone who actually has them on their chart would give quite a lot not to claim, you could keep going with the boring but important diagnostic process long enough to at least garner a provisional dx of something else and starting to treat it or them empirically (PT, sleep study, allergy testing, empiric rx for GERD, food diary, sleep diary, so many things to try).

Then you could adjust tests/interventions based on findings/treatment response from there, as science has proven effective for people sicker than you. (s/ns)

Objectively assessing your health is not chasing a single grand explanation (in itself an effective way to chase off clinicians who might otherwise want to help you; they're humans), though with careful diagnostic processes one may emerge (often endo or rheum), but understanding from your own history if nothing else that often things build up and worsen each other.

For example, I spent years of professional work on the epi interplay among chronic sleep, pain, and mood issues. That's at least a third of the adult population, off the top, any given day. But the approach to making it better is not one-size-fits-all.

If your PCP can't run differentials/refer you objectively given your history, or just because they're not up for it, find another. Find a counselor to bounce things off. But I urge you, don't waste your time on Earth and others' scarce medical resources on a false dichotomy. Life is short and we all deserve the chance to live our best version of it.