really glad to have found this super insightful summary of gems that speaks to everything i'm dealing with, worth sharing even if many terms may be new or foreign.
i think the extreme rapid muscle burn/burnout/fatigue in 1-15 min of quad usage (and back pain just sitting/standing) and more may relate to oxidative stress so taking note on those tips, and will continue to seek out non-invasive no-rx no-scalpel no-injection alternatives like laser/sonic/vibration therapies that some neuropathy centers are using to 'reverse symptoms and heal damaged nerve sheaths'.
i think the extreme rapid muscle burn/burnout/fatigue in 1-15 min of quad usage (and back pain just sitting/standing) and more may relate to oxidative stress so taking note on those tips, and will continue to seek out non-invasive no-rx no-scalpel no-injection alternatives like laser/sonic/vibration therapies that some neuropathy centers are using to 'reverse symptoms and heal damaged nerve sheaths'.
a common cause of neuropathy (see below):
- B12 deficiency > high Homocysteine > Neuropathy (stage 4)
summary of my neuropathic journey: short, long, bright side.
- P5P deficiency (morton's foot is the resulting deformity 'proof' of it)
- random self-ordered test found low B2
- high Homocysteine Hcy (lab suggested i test for MTHFr re common link so i did)
- MTHFr gene variant = 50% underproduction MTHF enzyme = methylation impairment = metabolic absorption and nutrient conversion issues = multiple vitamin (active form) deficiency incl ABCDs incl all my B's, the main focuses B12+B9 (folate).
- neuropathy nerve damage in both legs + left side weakness: diagnosed/confirmed 2019 by MD, after 13 years of clinics, with no follow-up no next steps on how to treat.
in short, i found out in this order:
- neuropathies > morton's foot P5P deficiency > low B2 + high Homocysteine > MTHFr + active methyl B12 deficiency (my B12 is in fact normal, but MTHFr can't convert any of it to make use of)
be your own best doctor:
my first clues were neuropathies/numbness/twitching in L foot/leg since 06 'sciatic episode', excessive stubborn come/go pain in my feet since 2011, discovery that morton's foot (big toe shorter than 2nd) is the cause of body postural/gait/pain issues and the stunted growth the result of an P5P (active B6) deficiency in the womb aka a nutritional deformity. i then learned many with morton's foot are unable to convert B6 to P5P, but will also be deficient in B12 conversion to methylcobalamin, its active form, due to one of 7 MTHFr mutations.
that is the order i had to thread my needle, learning through hours/weeks/months of my own research and doctor's serving a role on my team, not in solving the root cause caper vs helping confirm my hunches. the doctors i credit most are in functional medicine, naturopaths, chiros and think-outside-the-box renegade MDs who are catching on and breaking the mold.
get tested:
i suggest everyone ask their doctor to test their HCY and if high, then test for MTHFr, specially if you have morton's foot.
note: my B12 reads 'good' in all blood tests because it is. with a naturopath evaluating other biomarkers we figured out my impaired MTHF enzymes and methylation process are under-converting B12 into its active methylated form, which no bloodwork will show. and methylated B12/B9 etc. would seem to be key.
after 25 years of noticeable progression, suspecting something had to be amiss, for last 6-12 months it's tough to be upright for long without painkillers or reclining to take the load off. the upper torso can barely handle a half day on laptop, and when on my feet its even worse and the feet hurt too. some days, 10 min upright is all it takes to kick in. i can reset it by laying flat for 15min so might have to trade-in the low car for a van/suv soon.
summary of what I got (associated in part to the MTHFr gene variant):
- multiple vitamin deficiency incl BCDs ex all my B's (active forms) specially B12 which cascades into > assorted neuropathies (damaged nerves in feet/legs since 06, but only 13 years later measurable/confirmed by MD) which leads to > a myriad of symptoms related to motor/sensory/autonomic nerve sheath damage:
- sensory anomalies and warped sensations incl needles/tingly/numb, hot/cold sensations, hypersensitivity to specific bright high pitch kitchen/mouth tinny sounds, loud noises and bright lights/glares, all irritate and can grate on the nerves, feel too cold too hot, daily aches/pains, visual/balance auroras;
- autonomic anomalies incl blood pressure, bowel/peristalsis and bladder issues, breathing spells, swallowing issues;
- motor anomalies incl gait issues, twitches/tremors and weakness hurdles.
more examples:
- 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 up.
- driving left-handed as I have since 1980s i always easily managed center lane precision, but now strength/coordination off, the car now swims over tiles on boths sides of lane.
- nerves may be tense/ overstimulated no matter how relaxed trouble-free i am in the mind. stress often originates in the body first.
- buzzing or creepy crawler sensation over L ankle 2-3x/day is a drag, since there's never anything there, i usually dont swat at it.
- weakness: sometimes phone, laptop and driver-side door all seem 'twice as heavy' to my L arm.
- fatigue: sometimes i nearly fall into deep sleep in car or at laptop forcing another coffee. naturopath wants me asleep by 11p.
- confusion: leads to forgetfulness in annoying ways that force backtracking too often.
- anxieties: 'trapped/suffocation' phobia-related.
- lower intensity 'good days' i feel 85% as i still can't do activities i like or go very far or long, bad days stack it on incl phobia/anxiety
- to maintain 85%, i dose assorted vitamins in my am and pm routines and add fiber and veggie powders into my probiotic kefir drink.
had ample 'something not right' anomalies since sciatic episodes in 98, 03 and 06, the last two left me with new long-term neuropathies. went to canada mid 07 hoping to leverage state healthcare, but got little to no traction/insight, it got worse in 2011, retreated to family safehaven 2014 to figure out this hurdle as it worsens. the methodic approach has been slow painful, but thanks to some renegade doctors/researchers and victims having similar and worse experiences writing about their trial and error, i'm learning more, so more hopeful.
bright side:
- based on findings of last weekend, it seems MDs, on the front end, first seem to have no clue what all the symptoms you describe could be. on the backend, once they can measure/confirm it 13 years later, they then say 'nothing we can do' and 'learn to cope' aka 'pain mgmt' but ready to prescribe risky invasive interventions if things are going south. it's why i have little trust in MD diagnostics and solutions.
- luckily, there are doctors/naturopaths like this guy 'chris kresser' saying neuropathy, if treated early, can be reversed even healed with non-rx non-injection non-surgery alternatives like diet laser sonic 'tesla' bioelectric wavelengths. will look into that next.
takeaway (from cited source)
- not a lot of great information out there in the conventional medical world on how to troubleshoot neuropathy
- if you see elevated Hcy, suspect b12 and/or b9 folate deficiency
- stage 4 of b12 deficiency is when you see symptoms of neuropathy, anemia, severe fatigue, etc.
- impaired methylation can cause b12 deficiency or interfere with b12 metabolism
- higher dose sublingual b12 are as effective as injections
RHR: What Causes Neuropathy—and How To Treat It | Chris Kresser 21m
Chris Kresser, L.Ac
Published on Nov 19, 2014
Published on Nov 19, 2014
In this episode of Revolution Health Radio (RHR) we discuss "What Causes Neuropathy—and How To Treat It." There are a number of potential causes of neuropathy. Find out how to address the underlying cause of the problem for the most effective and longest-lasting change. This is an important topic and something that's fairly commonly experienced. There's not a lot of great information out there in the conventional medical world on how to troubleshoot neuropathy if you're experiencing it.
In this episode, we cover:
- Potential Causes of Neuropathy
- Testing for B12 Deficiency
- Four stages of B12 Deficiency
- Five Potential Causes of B12 Deficiency
- Treating B12 Deficiency
READ FULL ARTICLE: http://chriskresser.com/what-causes-n...
2:30 causes: b12 deficiency is most common, diabetes (usa), toxic exposure, mold toxicity, chronic inflammatory response syndrome, liver/kidney disease, infections ex. lyme disease, sleep apnea (can worsen neuropathy), and rx incl blood pressure meds. 4:30 if it's due to blood sugar, then the ketogenic diet can reverse it.
5:35 if b12 deficiency, 6:20 serum b12 not a reliable biomarker as you may still not have enough 'active' b12 or convert it. use more sensitive markers: methylmalonic acid MMA (urine/serum). 8:40 if MMA is elevated, then there's not enough active b12 to convert it into succinic acid. 8:50 urine more sensitive/concentrated but not good marker if you have kidney disease, and serum MMA test not good in cases of intestinal bacterial overgrowth (which is far more common than kidney disease).
9:50 another biomarker more sensitive is holotranscobalamin holoTC 10:35 stage 1+2 of b12 deficiency is when plasma/cell stores are depleted and TC reduced and only holoTC test will see it. 11:05 in stage 3 characterizes function b12 imbalances involves elevated homocysteine Hcy and urinary/blood MMA. 11:55 if you see elevated Hcy, suspect b12 and/or b9 deficiency. 12:25 stage 4 of b12 deficiency is when you see symptoms of neuropathy, anemia, severe fatigue, etc. most won't end up at clinics until stage 3+4.
13:10 if you run Hcy or MMA test in stage 3 you'll detect it before stage 4 even if all blood work look 'normal'. 13:30 so why not test holoTC since it can detect stage 1+2 deficiency? unfortunately not readily available to SF bay area labs, but for now, we can use MMA and Hcy tests to spot stage 3 b12 deficiency when neuropathy are still reversible.
14:40 causes: pernicious anemia PA (autoimmune) when cells in the stomach can't bind to b12 so that it absorbs in small intestines so you can't absorb b12 orally. 15:30 b12 deficiency is way more common in 83% vegans 68% vegetarians vs 5% omnivores (but omni with PA can have sibo or low stomach acid). glutathione deficit can lower b12 since one of G9's role is to protect b12. 16:30 oxidative stress incl exercise imbalance can deplete glutathione levels. 16:45 impaired methylation can cause b12 deficiency or interfere with b12 metabolism. 17:00 inadequate dietary b12 intake. 17:25 if it i b12 deficiency, adding animal foods good shellfish, organ meats, red meats. 17:50 if supplementing best with active: methylcobalamin best form.
9:50 another biomarker more sensitive is holotranscobalamin holoTC 10:35 stage 1+2 of b12 deficiency is when plasma/cell stores are depleted and TC reduced and only holoTC test will see it. 11:05 in stage 3 characterizes function b12 imbalances involves elevated homocysteine Hcy and urinary/blood MMA. 11:55 if you see elevated Hcy, suspect b12 and/or b9 deficiency. 12:25 stage 4 of b12 deficiency is when you see symptoms of neuropathy, anemia, severe fatigue, etc. most won't end up at clinics until stage 3+4.
13:10 if you run Hcy or MMA test in stage 3 you'll detect it before stage 4 even if all blood work look 'normal'. 13:30 so why not test holoTC since it can detect stage 1+2 deficiency? unfortunately not readily available to SF bay area labs, but for now, we can use MMA and Hcy tests to spot stage 3 b12 deficiency when neuropathy are still reversible.
14:40 causes: pernicious anemia PA (autoimmune) when cells in the stomach can't bind to b12 so that it absorbs in small intestines so you can't absorb b12 orally. 15:30 b12 deficiency is way more common in 83% vegans 68% vegetarians vs 5% omnivores (but omni with PA can have sibo or low stomach acid). glutathione deficit can lower b12 since one of G9's role is to protect b12. 16:30 oxidative stress incl exercise imbalance can deplete glutathione levels. 16:45 impaired methylation can cause b12 deficiency or interfere with b12 metabolism. 17:00 inadequate dietary b12 intake. 17:25 if it i b12 deficiency, adding animal foods good shellfish, organ meats, red meats. 17:50 if supplementing best with active: methylcobalamin best form.
18:00 if pernicious anemia or sibo or low stomach acid, you'll have issues digesting b12, so best to use sublingual form. 18:30 jarrow sublingual methycobalamin. 18:35 there are studies that show higher dose sublingual b12 are as effective as injections, but some patience do better with injections. so if you have serious neuropathy and sublingual high doses aren't working, talk to doctor about injections, but you'll have to ask/press for the active form.
19:25 supportive nutrients incl active forms of b9 methylfolate, trimethylglycine, b6 active: p5p, b2 active: r5p. 19:45 to put the brakes on oxidative stress: antioxidants/vitamins AEC, CoQ10, G9...
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