new symptoms more brain to muscle errors ex posture and right side coordination 4/15/21
impaired neuro-signaling: many functions askew, more profound hypersensitivities phobic anxieties 3/21/21
faulty neuro-signaling fatigues posture muscles 12/24/20
3 new symptoms: right side weakness creeping in 8/4/20
neuropathic journal: symptoms supplements diet rx (mar 2020)
my MTHFr impaired methylation and the associated vitamin/enzyme/ATP deficiencies can lead to neuropathy. a local dr chris kresser addresses this and how to treat it: my neuropathic journey: the mthfr neuropathy connection | What Causes Neuropathy & How To Treat It (incl B12 Deficiency) 6/2019
two of you hinted at parkinsons re tremors, twitching jolts at night, one arm not swinging, forward jutted neck, kyphosis-like hunch and forward lean posture (and resulting pain after 10min upright), but i know neuropathy alone account for it all aka 'impaired neuro-signaling'.
- while it's all symptoms are bad enough as they progress, if you add insomnia, phobia, anxiety wildcards into the mix, the combo can overwhelm; it's like the walls closing in.
dozens of symptoms flare up and down. one hour can be ok, another not ok. on better days you feel 85% and on bad days less so, but random wildcards spells can make it spooky intense ex 'hot/sweat' or phobia/anxiety spells (or 'need more air' spells).
since feb, having 5-10% flare-up, like years past, with neuropathic symptoms (resembling low methylation/vitamins/hydration) incl fast 80s/90s resting heart rate, 90-110 diastolic, no reason hot/sweat spells, phobia/anxiety spells, and trouble falling asleep etc.
- vitals; high diastolic 90s to 110; a new norm (steady since may 2021)
- vitals; high seated heart rate 80s/90s bpm; a new norm, is normally 60s/70s at rest (steady since apr/may 2021)
- difficulty falling back asleep after multiple interrupts (fake bathroom urges, limbs jolting/twitching, room noise, gut noise). now relying on 10mg anti-histamine before bed to sleep longer blocks with fewer interruptions aka sleep better (physiological/chemical stress is causing excess histamine which poses a host of other issues).
- 90s diastolic, 90s bpm pulse, cold hands/feet, but warm on top, low oral temp, low sleep: all date back to 2013.
- motor: losing strength/dexterity/
coordination in both hands and feet (more on the left) - motor: clipping fingernails on right hand with the weak shaky left hand nearly impossible.
- motor: evermore challenging to open ketchup/salt/utensil packets, food containers, cup lids, jars, bottles, doors/windows too.
- motor: typing is difficult with left ring and pinky fingers constantly randomly pressing-down caps lock, tab and ctrl keys and frequently forcing errors and corrections that slow down keyboard usage to a crawl, sabotages ability to work jobs that rely on accurate 50wpm case logging.
- motor: the drummer in me can no longer keep any rhythmic beat with left foot or left hand (no more jams) for 2+ years now.
- motor: weakness/tremors/numbing/
tingling in limbs and feet/hands/fingers - motor: both hands ring fingers interfering with neighboring fingers.
- motor: tough to pick things up with left hand fingers, impossible with left foot toes.
- balance/posture; erratic, shifting center of gravity without feeling dizzy, balance feels off tilted to rear, may be transforming posture (or vice versa).
- balance/posture; when I stand still, it feels like i lean into my heels and could kip-over backwards if not mindful, moreso if i look down at my phone or tilt head up to drink. its like when you step into an outhouse and it feels like it's tilting when its not.
- balance/posture; walking, it feels like I'm leaning forward using gravity to maximize my stride to maintain momentum as fit elders in 80s pass me at double my speed. if I try to pull back chin/shoulders to walk more upright relying on the strength of my legs, my stride is cut to a weak stroll, half the length and power. so the new forward lean gait, the hunched-forward posture maybe the result of a) an imbalance hurdle and/or b) impaired nerve/muscles.
- balance/posture; in the middle of the night, when half asleep, balance more erratic side to side so I stumble on night trips to bathroom, i lean in one direction then another; like a baby's first steps, tilting left then back etc. it's a wonder i dont fall.
- balance; one-foot balance off since 06 yoga, now stepping into boxers is a challenging full focus task that can trip me up.
- spells; aurora type visual flickering/dimming/spots 'lights out' effects (initially called no spin 'dizzy spells' to MDs and ER).
- spells; scrolling/using my phone, objects moving across my line of sight ex cars, makes uneasy/dizzy then phobic/anxious.
- spells; hot/sweat, high 90s bpm resting heart rate, low 90s blood oxy, 15+ min full body sweat for no reason; thumpy heartbeats, the car or room feel hot, stuffy, heavy uncomfortable intolerable, last episode was 50-80% humidity.
- low energy to do simple common routines ex. prep daily vitamin shakes, shower/shave, anything beyond eating takeout.
- posture/pain; low back pain when leaning forward to shave and brush teeth. low back pain/stiffness and intense 'pinch' sitting or standing if i lay on belly for a minute.
- posture/pain; wrap-around upper torso pain that hugs the rib cage.
- posture/pain; mid- upper back posture muscle pain when holding self upright 5-10 minutes, seated to eat or at computer begging need to recline for relief, or on my feet ex food prep. some days i have to recline after food prep, then again after eating, barely able to fold laundry.
- posture/pain; mid-upper back muscles are gripping/clenching tight and wont release (neck too) is pulling my natural 'proud' military posture into more hunchback posture (against my will/nature), unable to hold neutral posture when sitting/standing/walking, posture is starting to curl hunch lean forward.
- whatever caused the left arm to stop swinging ex neuropathy is likely related.
- sleeping on bed wedges may've contributed; sideways head felt like a bowling ball pulling on neck, so went flat again.
- kinking my neck too far too often to use phone may not help; eyes/head get lured into screens for 15-30 min stints.
- could be amplified by the lack of pulling/pushing weights weekly at a gym since the mar 2020 manmade lockdowns.
- 2x/wk physio hammer tense muscles, gave me 6 exercises incl pulling my chin/head backward against resistance.
- motor; handling the steering wheel reliably with one stronger more reliable arm forced to calculate and compensate for the weaker shakier less responsive arm to hold the car steady in the middle of the lane vs drift over dots one side then the other and to make tighter turns ex right turns. all take extra effort/focus.
- motor; my right foot is not moving smoothly or effortlessly from the gas pedal to the brake or vice versa anymore, can get momentarily caught-up posing a new motor coordination hurdle to monitor. (since mid may 2021)
- motor; left arm stopped swinging, may relate to new posture hunching/pulling. (first logged mid 2019)
- motor; I'm lighter than ever at 163 lb (high school athletic weight was 167), yet my gait feels heavier than ever, it feels like my head leans forward to use gravity to compensate for reduced stride hip/leg/foot strength. if i pull my shoulders and chin back and rely only on the strength of my legs, my speed cuts in half. [repeat]
- motor; gait can feel heavy tired burdened, feet at times seem to not lift high enough to clear the ground, so trip/stumble.
- motor; leg response delayed, shake-in-place or none at all if i stop walking or change direction ex move through a doorway. often on the first step-off after a pause, my leg will tremble-in-place instead of move or a foot wont lift high enough to clear the floor so i get tripped up, same if just standing still, but trying to adjust my foot ex pivot. stumbled 5x in 15 days in early may (low sleep weeks). (since apr 2021)
- cramping; all leg and postural muscles, from hips to feet, tight ready to cramp at any moment if i make any ambitious or carefree move as i maneuver in bed and in the car. hips hams calves feel 24/7 ready to cramp on a dime.
- phobia; on bad days, tight-space/enclosure phobia/anxiety can get overwhelming (ex. closed doors, no escape windowless rooms, crowded or tight parking lots, dense traffic, garages, tunnels). a hot stuffy car or room can feel heavy oppressive as can tight neck shirts, clothes, even breathe-strips i rely on at night. (since 2018)
- straight jackets, cuffs, coffins always bothered me. local trains cross under the bay in tubes which for decades were always a bit spooky when trains stop and wait at the bottom of the bay in earthquake country for longer periods.
- autonomic; spigot/sphincter function gradually weaker, spigot (ex weak stream/dribble) and sphincter issues.
- autonomic; frequent urges to pee; day and night can interrupt sleep 4-5x, bladder often near empty, but if i take antihistamine before bed, i sleep longer blocks with few interruptions (as if the problem is excess histamine).
- low bowel urges, low peristalsis; bowel movements avg 7-14x/month. tried ginger root, kiwis and fiber to no avail. persistent constipation artificially half mitigated with 800mg magnesium oxide every other day.
- autonomic; thermoregulator imbalance, upper half of body tends to feel warmer needing cool air flow, lower half can be much colder/frigid (feet/fingertips often 80-83° when torso 93-95° and oral 96-98), need cool air blowing on face in car even in winter so keep windows cracked open. makes tough sleepwear choices, whether to get half or more under covers.
- weight; lost 25 lbs (now lighter than age 15-20 athletics), 2.5 belt loops, pants falling off. (since starting magnesium oxide)
- breathing; nose-breathing challenged, forces mouth-breathing while eating/sleeping, feels permanently congested, yet drips after i eat or drink, if i blow my nose nothing comes out, breathe strips help my breathing. I peel a microthin flaky layer off the inside of the nostrils 3-5x/day so as to breathe free. (since 06)
- get reduced oxygen as it is, struggle to get enough oxygen even before adding any mask. (since 06)
- sensory; ongoing sensitivity to bright sounds and lights, many high-pitch sounds incl clicky squeaky tinny rattling sniffly and clanking bar/kitchen are always irritating, sometimes nerve-grating noise. same for bright lights/glare ex cars with brights on, even mid day, grates on nerves.
- sensory; 'hormigas/ants' is an annoying insect-crawler sensation 2-3x/day aka tactile hallucination.
- sensory; some visual auroras, some headaches, some 3 days low grade or an intense 3 seconds.
- autonomic; swallowing errors, awake or sleeping, the mouth randomly suddenly swallows all saliva in the back half of the mouth without closing the esophagus sphincter so you choke/cough. if eating, you'll swallow food half-chewed or whole.
- at times, it's almost impossible:
- for left arm to open driver's door without help from my right arm
- to get my left leg in and out of the car without help from my arm
- contortions involved in getting my no-swing weak shaky arm into jackets.
- at begin of the 'get in car' contortion, left ankle doesn't pivot with the knee, then after getting into the driver's seat, there's an extra adjustment to get optimally center-situated straddling the steering wheel, it's often not occurring on its own intuitively.
- at begin of the 'get out of car' contortion, the hip has trouble lifting the left leg high enough or pivot roll enough to get the leg easily up and out of the car frame effortlessly without dragging along, often begs all focus/effort and help from my arms. (video: https://photos.app.goo.gl/YJWwKWNaLX5cDvkn9)
- getting into bed, we automatically do extra little adjustments do get situated into a good sleep position in one direction or to maneuver into the next. i tell my legs to move 3-4x and they move lamely or not at all, as if too weak or on strike.
proud military posture: pull your chin back, shoulders back/down, crown up, lean back a bit...
- i would walk or hike more, jog more, if my left knee didn't flare up after 10-15 minutes and limited range motion on left toes could tolerate it.
- 2010, two trainers in calgary identified my quads above the knee were not firing aka disconnected.
- need a bike soon just to build muscle density before I get too weak.
get into car routineto help the knee, i plant/angle left foot anticipating it wont pivot dynamically, then try to lower my butt vs drop to lower torque on knee.get out of car routinestep 1 left arm slowly meekly opens the door shaking the whole time or the right hand helps if trying to get somewhere.step 2 with all focus, left hip can barely lift the knee high enough to not drag it out of the car without help from my arms. (video: https://photos.app.goo.gl/YJWwKWNaLX5cDvkn9)step 3 plant and angle both feet just rightstep 4 do a 123 rocker motion to roll out on 3 with momentum onto left foot while firmly pushing all my strength into left leg to stand up. as of 2021, i'm needing to leverage my butt to slide up against the post like a tripod for max stability.step 5 once standing i imagine we all do some type of left foot hop/pivot on left foot intuitively to maneuver out. whatever it is i cant do it anymore thus struggle every week 2% more to push the door further open and step away from the car doorframe.
- physio for backpain/posture, neurologists for rest
- B12 vitamin complex injections (my mthfr-naturopath advocates for methylated* vitamins injections every 4 days)
- if reflux pressing: endoscopy with h.pilori biopsy (most reliable) to ID gut/bowel issues, tube in throat sedation to relax gag reflex, it's safe.
- my LDL H 133 (range <100)
- my cholesterol H 208 (range <200)
- hemoglobin L 12.9 (range 13.2 to 17.1)
- hematocrit L 37.8% (range 38.5 to 50%)
drink (since mar 2021):
*the only way i can drink more water is to skip coffee/beer
3 to 4 16 oz tumblers (48-64 oz) incl
3-4 oz antioxidant pomegranate/cranberry juice, 3-4 oz mineral water 3-6 oz coconut K-water, 3-4 oz tap water, dash K-salt (1/2 tsp lemon concentrate optional). K=potassium.
1x 10 oz decaf 'americano' espresso with 1 pump hazelnut syrup 8g sugar.
1x 16 oz passion fruit or hibiscus ice tea with light lemonade but no other sugar/syrups (if too bland i add electrolyte tab +1g sugar)
discontinued: 8 oz fruit flavored 1.5% fat pasteurized/homogenized kefir (was advised low-fermented low-histamine yoghurt strains which is rare)
0-1 alcoholic drinks/week (since mar 2021)
supplements (most blended into shake)
have 10 capsules a day to take -too much to swallow- so I dissolve and blend them into a shake but even just making this tasty vitamin shake is, like shaving, is itself literally a pain in the back and too routine, killing daily motivation. end result, i'm taking my supplements every other day on average (should see if i can double the dosage)
chew: Jarrow methyl B12 1000mcg + Folate (B9) 500mcg + P5P (B6) 1.5mg
B-minus
Niacineamide (B3) 400mg
P5P (B6) 25-50mg
spray: Liposomal Methyl B12 1000mcg in am, 1000mcg in pm
C 6000 mg (1/4 tsp scoop=1g)(heaping 1/4 tsp=2g x2) (started higher dosing in hopes to help detox refinery pollution)
2x D-3 1000 iu (in winter)
Zinc 30mg
Magnesium Oxide 800mg
- hydroxizine/atarax 10mg to relax calm stresses in the body and fall asleep or when tight-space phobias/anxieties get too amplified. sleep like baby in 2 long blocks instead of frequent sleep interruptions with well-timed antihistamine before bed.
10mg amlodipine (lowered from 20mg in feb 2020)
10mg lisinopril (new since feb 2020)
- tried citrucel and nutiva hemp 12g fiber protein for half a year, didnt seem to help, so phased both out.
- tried adding 1,000mg of ginger root, but didnt seem to help, so discontinued.
- tried whole pears and kiwis 2/day for 3+ weeks, but it didnt help, so that ended (whole kiwis add a funky fuzzy texture).
- tried all three above at same time with no change
- what has seemed to decompact/soften and help get me to 3-4x/wk is 800mg mg oxide 5x/wk.
- tried no-taste bone broth collagen to shake, but it was pricey and an extra item in fridge and extra step so that didnt last.
- i added dried fruits/veggies in powder form in a 6 pill product called 'balance of nature'.
- want to add some low-histamine yogurt/kefir using your guideline, but cant find any without casei and/or bulgaricus strains so i hope you have ideas or we can explore how best to cheat weekly.
- it could alternatively be a thyroid issue making me half hot, half cold at same time, and cause much of the rest. a lesser known WTS Wilson's Temperature Syndrome, can't be identified by blood work. it's identified with an oral thermometer averaged over dozens of readings over days. if average is <98.5 then you may have lower thyroid function.
- how to test/treat low thyroid function undetectable by bloodwork (dr mark stengler): https://www.wilsonssyndrome.com
and I'm feeling a little off, 5-10% more physical/chemical stress in the body flare up symptoms incl 30% faster heart rate, feeling hotter+colder than I should, sweating, phobia/anxiety etc. symptoms seem to flare up and down, perhaps moreso with lower sleep.
5.24.21 2p sweat spell at cafe
heavy thumpy beats, sweating too much across whole body incl legs in AC cool cafe, in line to order food, down forehead, chest, 5min later seated dripping onto pants, not cooling down quickly at all. heart rate 92 to 98 for no reason.
my balance feels tilted toward the rear just standing in cafe, both with most upright posture or poor hunch, doesnt matter (a bit more if i look up to drink or down at phone). had to wipe soaked forehead dry. mild headache left rear.
it's moderate 69F not hot out, all i did in last 30min was my routine 15 minute stroll then sat in a shade spot in parking lot with the AC going for 10-15 minutes before walking 15 yards to the cafe. it took 12+ minutes to settle/cool down.
- at times phone, laptop and driver side door all seem heavier to my L arm.
- at times i nearly fall into deep sleep in car or at laptop forcing me into another coffee.
- confusion-based forgetfulness in annoying ways that force backtracking too often.
- phobia-based anxieties.
- a buzzing or creepy crawler sensation on L ankle 2-3x/day is also a drag.
what I got in quick summary mthfr mutation -> 50% enzyme underproduction -> methylation hurdle -> metabolic absorption conversion issues -> multi vitamin deficiencies incl all the Bs -> cascades into assorted neuropathies (damaged nerves in feet/legs since 06 but only now measureable/confirmed by MDs) -> myriad symptoms
ex motor sensory and autonomic nerves aka warped sensations/sensitivities aka feel burning/freezing/needles/electric/tingly/numb, feel too cold too hot, autonomic anomalies incl bp/dizzy spells, periodic bowel/breathing/swallowing issues, balance/gait/motor and weakness hurdles atop stubborn near daily ache/pain. good days are maneagable I feel 85%, bad days incl phobia/anxiety etc.ongoing muscle spasm/twitching/cramping, left side worse and weaker, left arm-swing is 50% the vitality/energy aka half lame, cant type, drive or cut food left-handed too well, bunch of nagging hurdles stacking.
driving left-handed as I have since 1980s was always center lane easy precision but now coordination off, steering wheel heavy, now swim in lane over tiles on booths sides of lane.
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