Sorry to hear you're going through it too. Started getting sharp, wrenching nerve pain in my hips and shoulders 9 years ago (at a fairly young age). It slowly weakened my limbs over time, and causes terrible neck pain and stiffness. I can't reach my head to shampoo it anymore, and I need a wheelchair for anything more than hobbling to the next room.

There are other problems too: liver, bladder, GI, which points toward something systemic like a mitochondrial or storage disorder. But those tests all comes back negative.

Done all the usual tests, and while a few of them show concrete problems, they are contradictory and don't point to anything specific. My neuromuscular problems are so reminiscent of ALS my neurologist straight up told me he thought I had it. But it's been 9 years with zero bulbar symptoms, plus my EMG shows no sign of MND and subtle signs of primary muscle disease. So it's like, ????

Got a second opinion at a fancy big-city research hospital, and ultimately they were stumped as well. Now they want to send me to Mayo clinic, which I hope I can find some way to afford if they accept me as a patient. But something like ~30% of people in my situation get answers from Mayo, so it's best not to get my hopes up.