Make sure you let us know how your test results came out. Hang in there.
Thanks. I only got home around 10pm last night.
bp was high, vital capacity (lungs) normal.
on the emg/ncs he says it looks like ALS.
but, the f-wave (echo from the spine) didn't show up, which i gather is not normally an indication of ALS, but then he went on to say that the f-wave often doesn't show up when there is severe muscle atrophy, so I'm confused--is "no f-wave" consistent with/expected for ALS or not?
I also don't recall if he saw lacking f-wave in a specific nerve or in general.
the cat scan (november) was neck & chest, to look for tumors that might cause als-like symptoms--none found.
the blood tests came back negative for lyme, syphilis, etc, but somebody dropped the ball on the HIV test. we drew seven more vials of blood to send off for HIV, GM1 (GM1 antibodies indicate MMN, but he says my hyperflexia makes MMN doubtful) and SOD1 (implicated in one form of the (rare) familial ALS). I don't know why GM1 wasn't checked in the first batch, but he says he is sending to Massachusetts General where he's seen them catch GM1 that other labs did not.
the (intern? resident?) spent a lot of time looking in my mouth. I thought, "uh-oh. he must see bulbar signs" but later he said no. i think maybe i was straining my jaw to open wide and created some suspicious movements that went away when i relaxed a bit.
the pt set me up with an rx for a neck brace (weak neck is major complaint, beside crippled hands) and the speech therapist got the technology guy to set me up with an appt on 31-jan to get setup with a morse-usb input device after i told them i wanted to pursue that. somebody else on the team went over what kind of arm exercises would be good--basically slide it back and forth on a able to use it without straining against gravity. maintaining my current level of bicycling should be good for lower body. another team member is sending me a referral letter, in case i need it, to get the akc to allow me a high-back chair (they've been kinda weird about chairs in the past, but they'll probably be reasonable for a medical need.)
the dr again discouraged me from taking "homeopathic" remedies. i did NOT point out that i am not currently taking the true homeopathic stuff-just a bunch of vitamins and supplements--i didn't feel that he would appreciate that distinction. he mentioned again clinical studies, and that i might not be eligible for them if i'm taking this stuff. i am certainly not convinced that the clinical studies are any more likely to be beneficial to me than this stuff, especially phase I and placebo-controlled studies.
i asked about my vision problem, but he thought it sounded unrelated. for now my diagnosed is "motor neuron disease".
the resident/intern guy retested my bp. dystolic was 115, down a bit from earlier. he and the dr became quite concerned and insisted i go to the emergency room. in ER it went down a bit more. I was there for several hours. my blood-sugar was 99 (very good). i normally bike at least two hours per day, but this was my third day in a row with no biking. the ER docs clearly were at least as surprised as i was that i was being sent to ER for bp that was high, but not emergency-high, and no symptoms. they lectured me a bit for going off my bp meds without consulting my dr and wrote me an rx for lisinopril. "you know, if you don't take care of it now, when you're sixty..." "uh, i appreciate the concern doc, but you know that clinic i that sent me here is the ALS clinic, right? i've kinda got, 'Other Priorities'..." my dystolic was down in the 90s by the time they discharged me (no treatment).
i filled the lisinopril.