confirmed by neurologist #2: L side weakness, nerve damage and neuropathies in legs

2/22/19  Saw the neurologist, 2nd one in 18 months. 

Dr. Bhattacharya was quick and effective.  He saw my top 10 bullet answers to his questionaire:

• suffocation spells / shortness breath
• legs and arms (mostly L) shaky/tremble
• feet go numb, quads burn up in 5min 
• L side weak, quads/glutes half as strong as R
• L glute atrophy 
• L foot/toes tingle/numb, limited half-range motion

• memory/focus/motivation
• momentary loss of balance 
• momentary passout/faint spells
• headaches: dull 2-day come-and-go 3-4x/month, 2 sec intense 2-3x/year

He asked whether i had diabetes (no) or drank alcohol (not much only 5 beers/wk), he said that is a lot, so I wondered what planet he's from or how devout these guys are.  Maybe he misheard me?  I repeated 'per week' but he heard me.  The last neurologist Karan (which sounds Iranian) told me same thing, was pro water anti all other drink (if i recall).  Both strong foreign accents from Mid-Asia, didn't culturally grow up like I did, both zero alcohol advocates.  To me zero is too 'one-size fits all' extreme.  

These two male neurologists had otherwise different approaches.  Karan felt like a mad-scientist who focused a lot on attaching electrodes and measuring current throughput between two points, zapped me for two long visits, concluded nothing remarkable, yet proposed using needles in my nerves next.  I said no way, i was satisfied.  This time i seek what natural interventions are most viable.

From my top 10 list of symptoms, a 3min talk, seeing my shakiness and hairless shins and a quick survey of the lack of tension/strength in the spread fingers on my L vs R hand, similar on legs, said "the shaking is due to muscle weakness".  I was thinking 'yes, but what is causing the weakness?'   

Dr. B tells me to 'relax' as he zapped me on R leg about 10 zaps where only 1 caused a jolt reaction, then the same on L leg but no jolt at all.  While unscientific, with dr. K, I jolted lots, with dr. B, nearly not at all. 

"Weakness L side & Neuropathy/Nerve Damage in lower legs... two different things", said dr. B.  "stop drinking all alcohol to keep it from getting worse... could be from concussion, mini strokes due to high blood pressure etc.

He asked if I've had my spine scanned recently.  I said no, but I tried to do a brain MRI last week, but I just could not put my head in the MRI brain cage 'hockeymask'.  My nerves are too frazzled to do that kind of straight-jacket cage around my face/skull, wont/cant do it.  He said "do a CT scan, done in 10 min".  I recall reading how we want to avoid CT scans, but for now was satisfied with preliminary diagnosis so did not object.  I asked what might we see from a CT scan and how might it change what we do?  "Tumors..." (can't recall what else).

Finally, the 2nd opinion was an MD who 'found something' that makes sense, has rationale and validates my nerve-related hypothesis aka is inline with my own self-diagnosis from 10 years ago.  i hinted as much when i partnered in health with tanya in 06 describing 'dozens of anomalies' expanding since 03 sciatic attack, and in a 2011 email as a '20-year slow motion stroke' to which her answer was always 'get back here and sit in on my yoga class and i guarantee we'll fix that'.  i had my doubts, but took the bait everytime.

You cant keep passing every blood/heart/lung/allergy test with flying colors yet no healthcare professional has any idea what the top 3 contenders are, unwilling to take a stab, so now i love/hate this guy.  My PA did ask if there's a family history of MS at one point, and did refer me to these two neurologists, so no complaints with her.  Right or wrong, I'm glad he took a rare stab at a diagnosis with such a high degree of authoritative certainty that I had to wonder why we even need to do a CT scan.  it seemed like a bonus afterthought.  Most MDs order it out of liability thus over-prescribe it out of fear thus increasing our exposure risk.

I was 30min late to the appt (next day i missed a rehab appt too) and this has happened 10x in last 10-12 months.  i call it memory wipe where i know i have a work gig or doctor appointment to get to one minute, start my way in that direction, somehow get destination distracted by something like 'late lunch' and some type of 'memory wipe' occurs and i figure it out 15min into appt (if at all).  or i have a thought and the second i reach for a pen or swipe a phone, it vanishes for 10 min if i recall it at all.  

similarly, i can watch a show i saw not long ago (weeks/days) and its as if for the first time, to where i can keep watching.  that ain't right.  for many years now, 2 hours after a movie ends, its no longer fresh enough in mind to talk about or quote lines from as people do.

And this week my nerves have been a bit more frazzled than usual, more rolling headaches, more tingly/twitchy and shaky on all limbs/torso all day thu/fri (all starting the day after going to gym in the am followed by a 6hr gig standing on my feet wed night).  

note:  this pattern repeated a week later, where the night after gym, i had an episode of more issues more ringing in ear more numbness, dizzy etc.  exercise intolerance would not be good as PN folk need to keep moving vs sit too long.

I have scheduled time to go back to neurologist and go over everything he said and question the value/safety of CT scan due to excessive radiation.  i had one in germany mid 1990s after which many of these issues started, related or coincidental.  

A week later, I had to postpone the followup due to a 15min vertigo episode with nausea where i realized all neuropathic symptoms have been gradually more pronounced in 2019 from the suffocation/breathless sensation and light/noise/patience/phobia sensitivities, to numbness/twitching/shaking in arms and legs. 

It happens to coincide with the rain/cold, when i also started slacking off my hydration ritual of electrolytes tea and the last 3 weeks stopped "ran out" of my methylated B6+B12 vitamins so i am forced to think these two things may have amplified all symptoms.

All this reminds me to get my Medical Directive in order signed by appropriate MD and witnesses before the next phase creeps up and makes me less able to focus/think/write my wishes down.  

Now, I've read CT scans are super high dose radiation equivalent to 100-200 xrays aka we should all want to avoid these, specially people with nerve damage + neuropathy. But I'm not sure which is worse; a CT scan or airport scanners that have given hundreds of TSA agents assorted career-ending cancers since they rolled out?  I've only been through it twice, but never again.

"Radiation-based imaging causes 2% of cancers", so i'd think it could make nerve-related oversignaling issues worse.  is it a solution that is part of the problem, yet doctors feel a need to nuke you to know how inflamed/scarred you are inside from all the previous xrays and CT scans to date, and all the airport body scanners you've moved through in life, or from the grid towers near your work/home/school?   

An alcohol ban is one notch away from saying 'no salt for you'.  are all the neurologists beer nazi?  to me 5 drinks/wk is not a lot, but he said it is when you have nerve damage as alcohol exacerbates it.  

motto:  if you dont like what the MDs say, dont visit the MDs.

* Bhattacharya is a prominent aristocratic title among the Bengali Brahmins... Bhattacharya was a noble title or upādhi conferred upon those Bengali Brahmins who were involved in sacred rituals by Indian kings and emperors in ancient and medieval times.

--
inbox search on 'mini stroke' and 'slow motion stroke' pulled up:

1/6/11   

it feels as if i am having 

a 20-year slow motion stroke

progressive paralysis at its finest

1/7/11
something is weakening all my joint tissues, i have to consider: connective tissue infection or stroke  

bonus intriguing resource that summarizes enough...   

2/8/16  

variations in blood pressure predict stroke far more powerfully than average blood pressure

3/8/17  intro elevated homocysteine, artery irritation/plaque, neuropathy, high coffee intake...  

--3/12 

went back to neurologist #2 to get some clarification, glad i did.  tried to ask for ultrasound, no luck.  

went to my doctor today who also sold me on the value of CT scan as the best next forensic step to knowing what's going on, tumors aside, to see if any scar tissue from old strokes, a CT angiogram to see vascular flow, blockages, to determine course of treatment.  said they might find reasons to adjust cholesterol no matter that bloodwork looks fine.  at first she agreed with neurologists re alcohol, but noted how alcohol abuse is the associated 'amplifier' and said 5 beers/week didnt seem like a lot.  

i also described the vertigo+heartburn+coldsweat episode on 2/28 and the assorted extra shaky/weakness and twitchy/cramps/numbness since spreading into my L hand/fingers interfering with my ability to type properly without errors, is a bit unreliable/dysfunctional while driving, and L arm swings half as much as R if i dont force it to match (noticed a few months ago, but pronounced last few weeks).  without putting ideas in her head, she suggested electrolyte dehydration, which was my initial take, but i also know MTHFR plays a role in warped metabolism of key nutrients.

my appetite has trimmed so i eat breakfast 9-10a, late 4pm lunch (sizable), maybe a light dinner portion 8-9p.  and it wasn't just electrolytes i slacked off in 2019, i had also run out of my methylated B6+B12 for roughly 3 weeks prior to 2/28 vertigo.  seems my frazzled nerves are borderline, too close to the edge of keeling over, if a 10-20 day break of B vitamins can do all this. 

i noted my primary concern as the suffocation/breathless hurdle whether standing moving or not, thinking it could be GERT/reflux inflaming/swelling the airways, which was her first guess too (without me suggesting it), so we agreed to retry reflux rx to see if that alleviates gas/airway/breathing issues.  i'd guess it could be related to neuropathy too, but no clue.  might ask but plan on trying reflux rx.

takeaway:  all my nerve-related symptoms (mom's and oma's too) happen to map to my genetic profile incl a unlucky MTHFR gene combo, i got the rare combo of one bad copy of the gene variant from each parent (or two from one) which is known to cause havoc of various types affecting one's ability to efficiently create energy, metabolize vitamins and nutrients, excrete toxins, thus contributing to chronic inflammation.  an unlucky combo that cascades into all else.   

get yours checked if you have issues.  i can send links to a 5 step "how to" do it cheap and what to do with the raw file.


4/25  post-CT scan report
Bhattacharyya, Neurologist gives thumbs up 'good news' all clear, says left side weakness likely slow onset from age 16 concussion, advises we do nothing, says with smile i go live normal life just stay away from alcohol and soccer* (which ain't my normal life) as i could injure myself in sport from the motor/numb issues. 

i am inclined to take his advise with 50/50 grain of salt and ignore half of it and this is why.  because english is his 2nd language, america is 2nd culture, i decided to doubt his 'alcohol' motivation.  i knew from my yoga studies that bhattacharyya was Indian and Brahmin priest class no less, which might influence his advise/belief systems.

so i asked the ER MD (western white american doctor) about alcohol re neuropathy, who said 10 drinks/wk ok not excessive, so I pressed Bhattacharyya on it, and he refers to the addiction gene (but he doesn't know my genes so his alcohol angle is one-size fits all).

asked what I can do to reverse the nerve damage, he said nothing except stop the damage (alcohol), eat right and wait.  said gluten and special diets don't matter to nerves, tens stimulation won't help either.