Ok, I am not feeling good about the lumbar puncture anymore. I’ll run the idea by this neurosurgeon of using Diamox instead. Thank you for that suggestion.
I wonder if it’s normal for any of us to have muscle weakness and loss of coordination, without nerve damage, that makes hands/fingers or other body parts shake when we try to use them in certain ways. So, not a rest tremor, not like there’s too much adrenaline…but like a sort of jerky, uneven action tremor because those muscles have some kind of problem. I can no longer navigate on my phone with one hand because my thumb has such a hard time. My typing is affected – I used to type over 100 wpm, and now I’m much slower due to what feels like finger muscle weakness and loss of coordination. And swallowing, I get water up my nose because it’s as though my tongue is also weak and uncoordinated when I try to drink.
And the other thing I wonder about is…do others wake from sleep with their body shaking rhythmically, like an internal tremor that lasts for a minute and then goes away? When I googled that, the only conditions that people had were MS, Parkinson’s, or traumatic brain injury. I don’t have any of those. Doctors have no satisfying explanations for most of the things I’ve been experiencing, and why it all got MUCH worse during pregnancy when I couldn’t stand still for a whole minute without feeling like blacking out. They’ve ruled out MS.
I sometimes have orthostatic intolerance and POTSish issues, but other times not. My PCP did a poor man’s POTS test in her office (when she diagnosed me with venous insufficiency because my feet turn purple whenever I’m holding still) and said I didn’t have POTS. So after 5.5 years of symptoms I still have no diagnosis. After my clean EMG the other day, the D.O. offered an SSRI and Gabapentin, which I declined…I know this stuff has an organic cause…it’s not psychological. Sadly, though, I think there are a lot of other people with similar experiences and no helpful diagnoses.