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jethro

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PALS
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HR
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in a 750000 citizens capital of my country, i found just one guy (early twenties) who has ALS. he was in china, hardly speaking and moving etc so i dont have base to compare with him.
there are at least more than 15 people having ALS in my town, but for sure they dont use internet.

as i said, i am still walking without any help and doctors trying to escape from me cause my questions are unanswered, always prolongue date of meeting for a two or three months, so i am on my own. fortunatelly, i can check all my tests for free (familly doctor writes receipt for everything i demand).
i'm in a mid progresion ALS type. ALSFRS 35, ALSFRS-R 43, FVC 102% (5,4 lit, 50yold, 184cm, 102 kg (lost 4 kg of muscles in 5 months!). sometimes yawn 2 days (mostly in sauna/gym), but 8/10 days no yawning. coughing - same, 2 days cough, 8 no. unpredictable, i think that yawn is connected to effort. in sauna i do it all the time, so i quit with sauna. first sign 2015 (and even before on right hand, but i thought that it might be cause i dont use pen at all, just keyboard. i couldnt write!). i know that symptoms differe from one to the other patient, there are patients with onset 20 years ago, but that is not a point of this post. point is to retain status as better as it can be - as long as possible - until cure is discovered :)

my right leg and hand are bad - even there's no visual difference between my right and left hand (right tenar is not degenerated visualy as EMNG says) i have small cramps on right (also started on a left side also 2 weeks ago), right foot drop, but i walk normaly when i wear sneakers. i lost 50% of power compared to my best days. tongue fasciculations bilateral, but i eat with no problems. slowly speaking just like i consumed alcohol. dont drink and smoke.
Legs EMNG is hard to moderate affected so i limp.
i can walk 300 meters (450 steps) at once.
dont want admit to myself that wheelchair will come. want it or not.

since this is rare desease, i can get whatever i want (i get rilutek for free, but i never tried it even once, few unopened boxes are in my draw) from doctor.
i periodically check copper, zinc, selen, b12, lipidogram (AST, ALT, tryglicerids, cholesterol), spinal liquor is ok, lead below alarm, i will check uric acid in serum... all tests i've done untill now are ok, but since i use MANY aditives, i have to check my blod very often.

please advice: what else i should check? i check my blod every two months. have no constant therapy. changing protocol according pub med results.



WARNING: I TOLD TO MY DOC THAT I DONT BELIEVE IN MEDICAL COMPARE OF DRUG EFFECTS ON MICE, ZEBRA FISHES ETC. TO HUMANS, AND RILUTEK IS A ONE WAY TICKET RELEASED 22 YEARS AGO. TODAY WE HAVE MANY EXPERTS, CASE STUDIES AND WORLD'S POPULATION ALMOST DOUBLED.
fish have bloodstream different, mechanism of stress and design of mice cells are different (even having all components - mitochondria, core, lipoprotein membrane etc), so there's somethin wrong from the beginning!!!! i strongly believe that there is small step to cure als, but this way of finding cure is completely wrong. every trial costs millions of USD, it lasts at least 3-4 phases= 6 years, and after that FDA approval, all countries need to approve it. that is the way noone on this forum will survive. there must be a drug invented already... something like naltrexone and MS/LDN.
THEY DONT WANT TO LISTEN TO MY "PHILOSOPHY".

reading medical publication
(pubmed), following richard bedlack and surprising suits :) , als untangled, etc etc.
my opinion is that RCH4 might be a commercial trick.
whenever "Placebo therapy" (267) is close to the top of ALS untangled, i dont believe in a vote.
 
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Atsugi

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Each case of ALS is very different.
You're right that some people can live many years with ALS.
A friend of mine has had ALS 4 years, and is now laying in bed all day, completely paralyzed, using eyes to communicate.
My wife became completely paralyzed little by little, but very, very quickly, and died after only a few days of total complete paralysis. She had ALS only 8 months.

Maybe you are in the middle, not fast, not slow.
 

affected

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lala land
I'm confused Jethro you were only diagnosed a few months ago?

I'm sorry I didn't have time to go back and read everything else you have posted in the past, but that jumped straight out at me.
 

jethro

Distinguished member
Joined
Nov 2, 2017
Messages
295
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
City
ZAGREB
@affected
yes, diagnosed 5 months ago after 2 years of investigation - neurologists, ORL, CT,
MRI x 2, internist, pulmology, endocrinology, second opinions etcetc... i wrote, i have ALS since 2015 cause onset was then. maybe even before it started.
prepairing took million of tears, changed plans after diagnose, pay off debt... you know it for sure.

now i'm prepaired. it took some time.
but my closest aren't. that affects me mostly.
 
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