NOTE: This message was originally in conference "INTERNET - E-MAIL AREA"
      and was copied here by Tom Mckeever.
From: Myron Wells 
To: Multiple recipients of list POLIO 
Date:         Mon, 4 Mar 1996 01:57:41 GMT
Subject:      Re: VOCS
Organization: Chemeketa OnLine (503) 393-5580
 
Elva,
 
you said you would be interested in learning more about the chemical
thing, especially since you worked in the printing business also. hope
this all makes sense and it's not too technical.
 
my diagnosis now is VOC-induced polyneuropathy superimposed on old polio
damage. VOC = volatile organic compound. VOCs are of particular concern
in an unventilated or underventilated shop. if it knocks you over when
you walk in the door, you do not have enough ventilation. the equipment
operators would probably be at most risk because they are right on top
of this stuff, but if you breathe it, it could affect you. equipment
operators also get these things on their skin, another avenue of entry
into the body.
 
my doctor extracted a long list of damaging VOCs out of the products i
used the most. he said almost any one on his list could wipe out a
nervous system. this list confirmed for him the diagnosis he made by
history.
 
the biggest concerns are about coal tar derivatives and chlorinated
hydrocarbons. some of mine included things like benzenes, methylene
chloride, trichloroethylene, perchloroethylene (since taken off the
market because it caused paralysis in dry cleaning workers), kerosene,
dichloromethane, petroleum naphtha, dibutyl para creosol, butylated
hydroxy toluene, methyldiethanolamine. other products of concern were
many different alcohols, such as methyl alcohol, ethylene glycol (the
antifreeze that kills your cat), isopropyl alcohol, diacetone alcohol,
2-butxyethanol. we used ferrocyanides, mostly in photography; phenols,
acetone, methylene, potassium hydroxide, sulfides and numerous acids:
acetic, sulfuric, hydrochloric, thioglycolic and phosphoric for some. my
favorite name: ethooxylated tertramethyldecyediol iodine (his spelling).
most of these are solvents. heavy metals can also cause polyneuropathy.
 
in polyneuritis, according to my Merck Manual, "sensory symptoms are
predominant. Tingling, pins and needles, burning, boring and stabbing
are some of the descriptive adjectives patients use. Pain is often worse
at night and may be aggravated by touching the affected area or by
temperature changes. Numbness and objective loss of sensation occur in
severe cases. The nerve trunks are tender.
 
Motor symptoms of weakness may progress to complete paralysis. Affected
muscles become tender, atonic and atrophic. Fasciculations or
fibrillations may be seen. Muscular responses to electrical stimuli are
altered. Tendon reflexes are diminished or absent.
 
Polyneuritis, or multiple peripheral neuritis, occurs as a bilaterally
symmetrical, simultaneous involvement of sensory, motor, and vasomotor
nerves. Manifestations begin in the fingers and toes and progress up the
extremities. The sphincters and trunk commonly escape. Subjective
numbness, tingling and other paresthesias precede actual anesthesia.
Pain, often burning in character, is prominent and poses a difficult
problem. Muscular weakness begins peripherally and is associated with
muscle tenderness, atrophy, and diminished tendon reflexes. Sympathetic
involvement is indicated by hyperhidrosis [excessive sweating], edema
and livid discoloration of the skin...
 
Cerebral symptoms of confusion, delirium and headaches occur with CNS
involvement."
 
i had almost all of the above, except possibly the delirium-and you
might think that too. since i got my sleep disturbances more under
control, my difficulty with headaches and thought processes have mostly
disappeared. as you no doubt can see, some of these symptoms also occur
in PPS. therein lies part of the difficulty.
 
my neurologist says the sensory damage most emphatically does not belong
to PPS. the numbness started in my feet and hands. sometimes they went
completely asleep, but otherwise they felt like you do when you are
coming out of novocaine, prickly. it worked its way up my body over
time. eventually, i would sometimes get completely numb up to my waist
even when standing up. when i went to take a step, i went straight down
to the floor. my body would "go to sleep" like when you sit on a body
part wrong but there was no pressure to account for it. my arms would do
that too. certain activities aggravated it. after i quit work for a
while, my arms and legs no longer went completely to sleep except for
the ordinary reasons, but now i have permanent partial anesthesia in my
mouth, throat and face-on top of old swallowing paralysis. he found
reduced sensation to pin, light touch, temperature and vibration from my
knees down and from the middle of my forearm out. nerve conduction tests
show NO indications of carpal tunnel or similar constriction. besides
the fact that polio does not affect the sensory nerves, my anesthetic
losses are symmetrical and were simultaneous. polio causes random losses
over time.
 
i now have a permanent tremor in my outstretched hands, not a symptom of
PPS. my reflexes are gone in both legs and my right arm. a trace remains
in my other arm. my arms have always been strong since polio. now i have
atrophy in my hands, weakness, cramps, drop things, etc., he thinks from
the VOCs. my whole body was involved in the original polio, so who's to
know about this one or the reflexes.
 
i also have bladder and bowel problems, which he says do not belong to
PPS, although that has been refuted on this list. he says it is from the
chemical damage. when i have to go, often i have to go NOW, even if it
is a little trickle. if i don't, i lose it anyway. he gave me a med that
is supposed to help that at night, oxybutnin. i take klonopin for
"restless leg syndrome", but i still woke up several times a night to go
potty, so my sleep was still disturbed. have also had violent pain down
my sciatic nerve that keeps me awake at night. this is always worse when
i am most active. the new medication has helped me sleep a lot better. i
only get up once or twice a night now and then can go back to sleep. i
have felt like i have a URI for years. i did have a bad one in the
beginning, but the irritated feeling never went away when the bacteria
did. now i take both meds. voila, the pain down my leg and back went
away too! coincidence? this drug's action is anti-acetylcholine.
(mestinon works for some people's PPS. i think mestinon facilitates
acetylcholine.)
 
when i first had symptoms, i had been working 3 months of 80 hour weeks.
we had no ventilation, so i had massive exposure. my body totally lost
it almost overnight, another reason this doctor thinks it was the VOCs.
i could not get out of bed, got pneumonia, got all this numbness, went
from walking reasonably ok to almost not at all, my blood chemistry went
whacked, all at once. he contends that PPS is more gradual. also i had
these other things such as screwed up blood chemistry and the
anesthesia, which he says do NOT come with PPS. my SED rate was high and
no one could get it down. my CPK was high, which HAS been demonstrated
high in PPS. several of my other blood tests were off too. no one could
find an explanation. now that i am retired and no longer exposed, i test
normal, he says further proof the VOCs were the cause. one called GGT,
something with the liver, is still off. if anyone knows what that is, i
would be interested to know. i was always told that the PPS could not
explain some of these things. this doctor says it was a classic picture
of VOC toxicity and that someone should have seen this a long time ago
and got me out of there, reducing the damage.
 

 
yes. he says my nervous system was already compromised by polio and
therefore more vulnerable to the VOCs. the PPS makes the VOC damage
worse and vice versa too.
 
loreen wells
myron.wells@chemek.com
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