Not sure which category to put this in, but I’ll put it here, because it was previously (wrongly) presumed diabetic neuropathy.
As usual, sorry that this is going to be long-winded.
For years, even way before dx, I’ve had numbness, clumsiness, and pain in my hands. The left way more than the right. Used to be intermittent. As of dx, it was assumed to be neuropathy, and the intense pain in the mornings was attributed to sustained overnight lows. Since using CGM, at least I’m catching them, so that was debunked. In the last few months, its been really bad, mainly with dropping things, and not being able to rely on my hands to do simple things. I’ve developed pretty bad tremors in my left hand, mainly my pinky trying to secede from my hands.
My PCP sent me to a neurologist, to rule out all the biggies that could cause tremors. Brain scans, cervical spine scans (where they found a lot of bone spurs, and scared the %$%^^ out of me, because it “looked like bone infection”, wasn’t, after more tests and rushing in for more MRIs). Every time I talked to a dr, they kept on asking if I was sure that I didn’t have a fever, and how painful was it to move my neck? (no fever, and not at all). Anyway, they set me up with an orthopedist, the same practice I usually go to, where I’ve never seen the same dr twice. This is where it gets fun. So, I wait in the drs office for 30 minutes after my appointment time, kinda freaked out, trying to figure out in my head if I even would choose to have neck surgery, if that’s the only option. Decide, screw it, I’m not waiting anymore. By this time I’ve worked myself into frustrated crying. I’m a super ugly cryer. Go into the waiting room, ask for my copay back, tell them I won’t be back. Excuses follow, “He should be done in 15 or 20 minutes…” A youngish dr who’s obviously headed out sees this exchange, and says he has time to see me. Coincidentally, a few years ago he worked with the surgeon who did my back surgeries in 2007 & 08. Super pompous guy, but in an awesome way. Physiatrist, so definitely more used to dealing with broader problems. Looks at all my scans, says the bone spurs on my neck are bad, but not terrible, and if they don’t bother me, why worry about it right now. Even looks at my shoulder MRIs from a few years back and says that was frozen shoulder, and is kinda miffed that it was misdiagnosed as osteoarthritis.
Anyway, does a quick but thorough exam of my hands and elbows, says, “advanced cubital and carpal tunnel syndrome in the left hand, you’re going to need surgery. Mild carpal tunnel syndrome in the right hand. We’ll need to check if there’s cervical radiculopathy as well.” Sets up an EMG, which I had the next week. No cervical radiculopathy, and he’s correct about everything else. Saw the hand surgeon last week, and going for left elbow/hand surgery on the 21st. I had sworn off more surgeries, but she said even with pt, its not going to get any better. Even with wearing splints at night, which greatly impede sleep, its been getting worse pretty quickly. Surgery shouldn’t interfere with vacation, the arm splint should be off the first week of July, (unless she has to move the nerve, but we won’t know that until surgery) in time for my hubby’s aunt and cousins visiting, and the wrist splint most likely will be off or at least removable by the time we go visit my mom in late July. I’ll be doing PT for both hands, but some of that can be virtual.
I’m calling this a win. No spinal meningitis or MS.
Its fixable, and I won’t be totally helpless. And I found a good bone dr, which I need, considering the genes my dad passed on.
