ive been self-diagnosing self-tracking symptoms since 03, calling them nerve-related since 06, but had to wait 13 years later for MDs to verify it. missing from my list are anxiety and phobias and most of all 'low energy'.
Dr Karan saw me in 2017 and found nothing, advised more water no alcohol. in 2019, saw Dr Battacharya who did confirm nerve damage and neuropathy possibly from concussion. he had no treatment advise except to stop alcohol so in 2021, on recommend from healthcare staff, I'm giving the first Dr another go. both MDs are trained in India. the reason they say no alcohol is most with neuropathies are diabetic or alcoholic, yet western MDs told me 10 beers/wk is not a problem, so that angle seems to be more of a cultural difference.
one reason I retreated back to the family ranch post-canada was in hopes to get to the bottom of ongoing odd nerve/muscle issues since 03+06 sciatic episodes. since 2006, i've described it all as 'neuropathies' that all began with a 12-hour 'cant move' paralytic sciatic episode that felt like a 'micro-stroke'. so it took 13+ years before any MD was finally able to measure or see enough evidence to validate some of it in 2019. now to see what neurologist #1 finds 4 years later...
dr karan neurology visit 6.3.2021 real-time play-by-play
just like in 2017, his staff set things up such that he is, as expected, running 1hr late. staff isnt even here at all today. after 1hr in waitroom, dr karan calls me in.
i hand him my half page printout of motor, autonomic, and sensory symptoms, he read the first 'motor' block aloud.
i hand him my half page printout of motor, autonomic, and sensory symptoms, he read the first 'motor' block aloud.
he turns to ask if he's seen me before. yes, in 2017. have you seen another neurologist since 2017, and who was it??
Dr. B.
and what did he say? I paused not wanting to give it up, then he suggested 'Parkinsons'?
No, Dr. B diagnosed neuropathy. he hasn't yet run me through an exam, so this is his 'on sight' hunch.
he turns his back to me to sit at his computer in corner and spends 10min trying unsuccessfully to log into networks, so i'm able to text this play-by-play.
he asked what symptoms I had in 2017. similar numbness/weakness, it's just worse now, shaking now obvious. left side shakier weaker, more posture/pain symptoms.
dr is running network diagnostics. think i recall this routine last time 2017 too, like waiting an hour, this feels deja vu.
he asked about MRIs, told him I had a CT scan in 19.
he turns his back to me to sit at his computer in corner and spends 10min trying unsuccessfully to log into networks, so i'm able to text this play-by-play.
he asked what symptoms I had in 2017. similar numbness/weakness, it's just worse now, shaking now obvious. left side shakier weaker, more posture/pain symptoms.
dr is running network diagnostics. think i recall this routine last time 2017 too, like waiting an hour, this feels deja vu.
he asked about MRIs, told him I had a CT scan in 19.
what's up doc? his system still hungup, his form is not active, suggested a refresh/reboot. he agrees, does it.
then he turns saying 'Parkinsons', has me stand and walk down the hall, said gait looks fine, saw one arm not swing, said 'Parkinsons' and on my return walk continued 'or ministroke' [i have self-described what all keeps mucking with my athletics as a mini-stroke since calgary 2010, bet i could find the 2010 email.]
he doesn't think neuropathy.
his system now working, dr karan dictates into a mic that spells out what he says into online forms
dictates: patient able to walk without shuffle... mild tremor in arms, mild unstable gait... has dyskinesia.
and he reads from my 'symptoms' printout into his mic and asks to keep it, so i'm glad i printed it out:
motor: military posture weakening into kyphotic hunch with pain (20/21), gait hesitation glitches ex leg shakes instead of moves (21) and on toepush (18), no left arm swing (18), lean forward heavy tired stride (21), feet not lifting high enough to clear obstacles (21), half range of motion left foot/toes since stiff toe 'fake gout' (18), left foot 10% numb and constant left calf spasm since sciatic episode (apr 06).
left leg and left arm weak and shaky (19), can barely get car door open or get out of car, tougher to get/in out of bed and move around in it (20/21).
balance: flawed, often kips to the rear (06), erratic if half asleep like baby's first steps (21).
autonomic: 85-110 resting heart rate, hot/sweat spells, thermoregulator aka uncomfortable if too hot (or cold), random swallowing errors causes choking.
sensory: lispy tinny klanky high pitch sounds and bright lights irritate and grate on nerves (03)
more motor examples...
it's tougher to operate the car, to hold it center lane, make tight turns, move foot easily between the pedals, so drive slower.
it's tough to open lids/salt packets and cut my food, 5x faster to hold the knife still and move the food back and forth.
how is your sense of smell? normal.
he can't pull up my 2019 CT scan, no surprise, expected it. he wants MRI, needs MRI, says CT not enough.
also ordered up a DAT scan to check the neurons.
also ordered up a DAT scan to check the neurons.
ordering blood tests incl heavy metals
prescribed daily B complex with vitamin C, so i mention i take methylated B vitamins re MTHFr every other day and asked if he knew MTHFr, he said yes, but with his back to me and a mask on face it's tough to believe he heard me, so will tackle that later.
said he wanted to start me on rx for Parkinsons, but needs the workup first. he must have said Parkinsons 5x so I asked: so it isnt neuropathy and he said he needs all the work up to determine.
and we're done so headed for food. live play by play was key as i wouldn't be able to recall all that.
after I told Dr Bhatacharya I had excess MRI claustrophobia even with open MRI attempt in 2019, he said not a problem, CT scan just as good for him, which we did. when I made the same point just now, Karan was adamant, CT wont substitute and prescribed a sedative to take before the MRI.
prescribed daily B complex with vitamin C, so i mention i take methylated B vitamins re MTHFr every other day and asked if he knew MTHFr, he said yes, but with his back to me and a mask on face it's tough to believe he heard me, so will tackle that later.
said he wanted to start me on rx for Parkinsons, but needs the workup first. he must have said Parkinsons 5x so I asked: so it isnt neuropathy and he said he needs all the work up to determine.
and we're done so headed for food. live play by play was key as i wouldn't be able to recall all that.
after I told Dr Bhatacharya I had excess MRI claustrophobia even with open MRI attempt in 2019, he said not a problem, CT scan just as good for him, which we did. when I made the same point just now, Karan was adamant, CT wont substitute and prescribed a sedative to take before the MRI.
thursday before appt
spent time at a mattress store, had a tough time getting up into all these high bed mattresses, firm and medium, scooting along to get into a good position in all of them, was equally troublesome, not easy, was worn out, winded after maneuvering in/out of 3 beds, so my new difficulty getting in/out of bed seems universal.
arrived early to 4p appt. there's no staff and a guy in wait room. his appointment is 3pm. i knew it. again, the staff screwed up like in 2017 and he is 1hr behind. and no staff to give me paperwork. at exactly 4pm, mr. 3pm goes in and doc starts by asking him if vaxed, guy says no so doc pushes the vax as very safe, guilt trips. the guy exited with one arm held stiff as if he got a shot, kicked myself for not asking.
arrived early to 4p appt. there's no staff and a guy in wait room. his appointment is 3pm. i knew it. again, the staff screwed up like in 2017 and he is 1hr behind. and no staff to give me paperwork. at exactly 4pm, mr. 3pm goes in and doc starts by asking him if vaxed, guy says no so doc pushes the vax as very safe, guilt trips. the guy exited with one arm held stiff as if he got a shot, kicked myself for not asking.
friday
sat in barber's chair to get haircut, noticed I couldn't sit straight tall as usual and was focusing on it. she even had to pull my shoulders back to the chair flush to the chair and 3x pushed my head/neck back. I don't really recall this in the last 3+ cuts so it made me wonder how recent its become a thing. then again, maybe I just wasn't looking for it before so it was there but it didn't stand out.
then saw 'back on track' physio, Pamela was talking 'good posture cues' to which I said i had military posture until 2020, that i'm fighting strong forces curling/pulling it into kyphotic hunching. then mentioned the neurologist feeling it was Parkinsons so she ran me through her own tests which were basically the same incl holding both arms out eyes closed and touch this etc. she had me bend over touch toes and noticed i couldnt do it without 'bent knees' (mostly my left, but it's a symptom of parkinsons i gleaned in 5min). she said she too would say it looks like Parkinsons.
sat in barber's chair to get haircut, noticed I couldn't sit straight tall as usual and was focusing on it. she even had to pull my shoulders back to the chair flush to the chair and 3x pushed my head/neck back. I don't really recall this in the last 3+ cuts so it made me wonder how recent its become a thing. then again, maybe I just wasn't looking for it before so it was there but it didn't stand out.
then saw 'back on track' physio, Pamela was talking 'good posture cues' to which I said i had military posture until 2020, that i'm fighting strong forces curling/pulling it into kyphotic hunching. then mentioned the neurologist feeling it was Parkinsons so she ran me through her own tests which were basically the same incl holding both arms out eyes closed and touch this etc. she had me bend over touch toes and noticed i couldnt do it without 'bent knees' (mostly my left, but it's a symptom of parkinsons i gleaned in 5min). she said she too would say it looks like Parkinsons.
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