Now, after all, can I bring my cause of ALS?

[jethro]

hi,
since i am diagnosed, i sit at home, go to gym/spa, like i used to do in past 20 years learning about als, read pubmed, alsuntangled...
i am not eligible for nurown trial. i am not usa/canada resident, im 50 y old, 210 pounds weight for last 10 years (i felt and i had left elbow luxation, didnt go out on icy streets, lost 10 pounds, but i 'm gaining mass again) fulfill all requirements except residnt/citizenship, never used rilutek or even most benign drug, self sufficient, never ill, financially ok, but i have nobody arround me to help me, just two kids to take care of. maybe this is why iam still alive: my mind, love, brain etc won't let me pass...

MAYBE THIS IS CRUCIAL:
i had car accident in april 1997. i was always healthy, so i had no reason to visit doctor, make status of my blood etc.
i had trauma SAH with serious damage of my brain in that car accident. docs said that there's nothing they can do, so they let me to die at home. i was in coma for a few months (with lateralization right side, right hand and leg). i slept like lion: 20 hours a day. i just woke to eat and go to rest room. every day was a same day: eat same, drunk same, just like in groundhog day movie.
i woke up one day feeling dizzy, draw my right leg and hand, saw many botles (app 100 2lit bottles) of cocacola on the flor. asked my mother: "who brought this bottles? why do you keep this rubish?" she said: "you drank it". i was shocked!!!! how long i was like this? few months, she replied, explaind me what happened. i ask her to show me blood results, cT, MRI, maybe i can see something...

i dont want to bother you with details, BUT blood test was ok, EXCEPT high AST and ALT, which were double elevated then upper referent limt.
step by step, i overcome that "status" with aerobic every day excercise/few hours.
after few months, i checked AST and ALT again, they were the same elevated! doc thought that i drink alcohol, i never drink alcohol! eat to much fat, cause triglicerids are also high, but not significiantly (app 2,5, ref. is 1.8 ). went to other one internist, said the same. steatohepatitis, need diet. few years later, five, AST and ALT were the same. i lost 15 pounds, they were same elevated! 10 years after that, they are still the same. 20 years - same! Elevated! for 21years same numbers!!!
:arrow:
ALT is also known as SGPT (serum glutamic-pyruvic transaminase), and AST is also called SGOT (serum glutamic-oxaloacetic transaminase).
high concentrations of glutamate in certain neurological disease conditions, such as multiple sclerosis and ALS, have been mentioned in recent literature. this has raised concerns about the safety of administering glutamine (which can be converted to glutamate). I must say that since 1997. i have same dizzy, right hand is weaker... riluzole reflects to liver enzymes. i have 5 boxes of unopened riluzole, i'll throw them away. i dont use it and ill never do.
I think i should check CK (creatine kinase), also called CPK (creatine phosphokinase), which is only found in the heart, skeletal muscles and brain. ALS patient have elevated level of cK in app 40% of patients.
q: did anybody checked ast, alt and ck through past years? glutamine/glutamate can be cause of ALS.

as i said, i feel dizzy and i am not stable for 21 years, first i thought that all that symptoms are somehow connected with car accident, but few weeks before i am diagnosed, i couldnt walk on toes, heels, walk more than 300 meters at once (still the same!) etc.
fasciculations started in spring 2015, right eye, along with right leg weakness.

EMNG legs and right hand is devastating. first EMNG i did in 6/16, and was ok, but second in 9/17, done two times, various hospitals, diagnose 1.MND, 2. "according all data, we can conclude it is als".
compared to novemeber's EMNG, doc said that numbers shouldnt be markers, but clinical status. he said that i am 10% worse than in 11/17.
asked him when can i expect wheelchair, he said that he will win nobel's prize if he could answer that question.
BABINSKI=NONE (negative) few times. how many percent ALS patients have babinski +? couldnt find data.
Reflex=+3. What is pals specific value?
sorry for language, it is not my native, but i hope i was clear enough.

can anybody comment/answer?
thing that i need to do is to make CK test. according to medical data, 43% pals have elevated ck. maybe i will be smarter. still trying to be tiresome expecting to take me to israeli hospital to be patient of nurown with all kind of disclaimer, but not part of experiment in blind group.
ill take all responibilities and expences.
aut caesar, aut nihil/Ē tan ē epi tas

 

[KimT]

My CK is normal and it has always been normal. It hasn't varied in 20 years.

My only blood abnormalities were high B-12, low iron (now corrected) low thyroid (now corrected) and high free copper (now corrected.)

Everyone is different with ALS. The thing we have in common is progressive weakness and an EMG that corresponds to our clinical findings.

 

[jethro]

My CK is normal and it has always been normal. It hasn't varied in 20 years.

My only blood abnormalities were high B-12, low iron (now corrected) low thyroid (now corrected) and high free copper (now corrected.)

Everyone is different with ALS. The thing we have in common is progressive weakness and an EMG that corresponds to our clinical findings.

thanks kim. it is really impossible to find orphan drug which cures such variety of symptoms/clinical findings, so i think that whole neurology/biochemistry/pharmacology is on a wrong way. cure is inside us. ALS is reaction. i lost my legs (2-6000 steps/day), but i'm still powerfull in my hand. god knows when it will disappear. do you have info how many pals have babinski positive and average reflexes? you gave me an answer already, but that info wont hurt me..

 

[KimT]

I don't have statistics but neither of my feet do anything when they check for Babinski. Toes don't move down and they don't fan out. Go figure. I can still walk on my toes and heels but not as easy as before.

 

[KarenNWendyn]

Hello Jethro,

Regarding the elevated CPK, this test can be elevated in some (not all) persons with ALS. It is a muscle enzyme and can be released from muscle that is atrophying, overworked or somehow stressed. It can also be elevated by certain medications (most commonly Statin drugs given for high cholesterol). The normal distribution of CPK values has a very wide bell-shaped curve, and there are some perfectly normal individuals who always run values in the 300-400 range, for example.

Some of the same enzymes found in the liver (AST and ALT) can also be found in muscle. So people with an elevated CPK are often more likely to have elevated AST and ALT.

You’re correct that AST is same as SGOT, with the G standing for glutamate. However, I don’t think there’s any significance between the glutamate in this liver enzyme and the glutamate that damages motor neurons in ALS. If there was, we’d see a lot more motor neuron disease in people with liver disease.

I agree it’s probably best to avoid Riluzole if your liver enzymes are consistently elevated because it would make it too hard to monitor if the drug was harming the liver. My neurologist said we worry if liver tests are basically normal at the start of Riluzole therapy, and then if they go at least 3x normal.

 

[WendyWooG]

my CK levels have been very high throughout. We are all slightly different in how this illness affects us. You also need to take into account any other conditions you may have as well as ALS. I have autoimmune problems which give me symptoms that are totally separate to the ALS.

things will also vary depending on the level of upper and lower motor neurone involvement. The symptoms are different..

I have no Babinski reaction at all and my reflexes were on the low side of normal or completely absent. I also did not develop any spasticity until a long way in to this illness but I lost strength and control very fast. My neurologist has explained that this is because my disease is very lower motor neurone dominant.

We are all slightly different but all in the same leaky sinking boat. I personally am bailing like mad, and making the most of my life while I can.

Wendy

 

[jethro]

... I can still walk on my toes and heels but not as easy as before.

kidding?
i didnt follow your posts, but... do you use wheelchair? if no, how long you can walk?
if yes, since when?

 

[KimT]

I was a runner and athlete.

I can now walk 1/2 mile on a treadmill to keep me steady. It takes 10 minutes.

I can no longer (recently) do a deep knee bend but I can stand on each leg. My ankles and knees are wobbly so I'm extremely careful when I walk. I've only used my wheelchair to practice. I don't go to places where I need it. I can still climb a flight of stairs but my legs are on fire after the climb.

I try to get up and down and walk around my condo often during the day. I can still drive a car.

I have a friend who is 4 years in and still drives and walks. She has a strong limp but is very slow progressing.