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4jcobb

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I need help. my family is very concerned and I'm am very scared. I have three lil ones and I'm only 28. so I need to know if I need to get this in place. thank you for advance for whoever responds

it started with neck pain that I had for a few months now.. the second week in July I had cut my finger wit to the hospital and got a tetnus shot. the next following week my back start severely hurting . it then traveled to my wasting legs arms and hands and feet. two days later I started to have a tingling feeling in my body and then started the twitching and muscle loss. I was 184 and now I'm 170. that night my body starting twitching everywhere and it see the twitching was causing the muscle loss.i was a real built type of guy now I can feel my ribs and my legs and arms are toothpicks. no one can explain it.i also lost muscle in wierd spots like my eyelids, sides of my mouth lips and top of head..

I went to four specialist a rheumy,gatsro , heamtologist and neurologist.. rhenium is negative for everything.gastro I just did a ct scan abdomin yesterday, heamtologist was cause I'm anemic but have good b12 and iron and my serum protien electrophorus had a 1.9 on gamma gobulin level, the neurologist in Bensalem pa did a emg and ncv and all was clear he said. when he did the emg he stuck in needs but did t ask me to clinch my fist or feet or nothing..it was only ten mins for emg


I'm so scared so lost and family is so lost they don't even wanna believe me.i lost muscle everywhere and is twitching everywhere..please help me what else would cause this? or domi have it and they just won't tell me...please help
 

4jcobb

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also i forgot to add I had a cpk test island it's 309 ...I took it right after the emg..I do lift weights lightly every day for ten mi s to try to keep up..I don't know if the 309 is cause muscle damage or emg or weight lifting
 

4jcobb

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I'm sorrynim forgetting so much..I also have very bad hand leg and arm shoulder pain.. all my Bones crack and pop.is bad


184 August 8 now I'm 170
twitching
bones cracking and popping in hands feet ankles
muscle loss everywhere including head eyes mouth nose hands feet arms chest shoulder within three weeks
cpk test 309
archness all the time
no weakness no tripping no slurring I can do everything I done before I used to run lot and now when I run it feels wierd like I have rubber legs.
30 pounds weights feel heavier now but can still do them not as much
 

Alyoop

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It sounds no even slightly like ALS. You can breath a sigh of relief. The question to ask here is, What did the neurologist find on the clinical examination? Anty sort of muscle wasting, atrophy, is very apparent to a neurologist. Atrophy visible in a muscle, will be accompanied with an abnormality on examination, usually marked weakness. An EMG of a truly atrophied muscle ( caused by a neurological issue) will be abnormal.

So what you need to tell us is, what did the neurologist suggest, if anything, was abnormal. The neurologist is the expert here , not the forum members.
 

4jcobb

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THANK you for responding.me and my wife refreshing every two mins..he said you do not have AlS or all the other ones..not even carpal tunnel....but I got muscle loss and twitching that has occurred and iis still occurring..there's no other diseases that have that in common..I lost 15 pounds in four weeks and even my doctor told me " losing too weight" my hands and feet and throat and chests ,legs are very atrophied..and it happened all together..my but is so small now..I know you hear alot about atrophy hear and there but I'm very i tuned with my body and it's all muscle wasting everywhere even inside my mouth..the twitchig is always constant..I can't explain it..I know you guys are suffering with what your ongoing thru but please steer me right..I have no clue but to get more emg and ncvs to double and triple check while in the meantime by neck and legs Get smaller..I'm skin and bones..I did think Al's can wipe out every muscle in body including penis forehead cheek in a month time..
 

ironmike

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Listen I can relate to what your feeling but I think you can put your mind at ease with all the testing coming back o.k. Everything I have read and been told by my Neuro shows that a clean EMG leans towards you not having Als. Alot of times our anxiety can send our bodies into panic mode causing adverse chemical reactions. Constant fear, depression and anxiety all lumped together along with not eating normally will cause the body to change and do things out of the ordinary. Most times we assist our bodies unknowingly to decline on emotional stress and worry. I like you have 3 kids and im 34, have not had the luxary of all the testing as I am still waiting. I will say there are very helpfull threads here that if you have not read u should. The people here are very knowledgeable and the advice is typically sound. NOW GO HAVE SOME FUN WITH YOUR KIDS :)
 

4jcobb

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thank you mike it's the the not knowing the and progressiveness of whats happening..I mean the twitching and the muscle loss happened at the same time and still happen I lost 15 pounds of it.. also as I write this I'm twitching everywhere plus the cpk test shows there muscle damage in my blood..i heard the emgs are not perfect and can't always detect Als..I never heard anyone on here losing muscle in three weeks and twitching all over body. I lost muscle everywhere..u name it i lost a lot there. I have no problem running jumping eating etc other then my body cracking and nerves buzzing all over my body at all given times.my ankles are bare ..my hands are bare veins showing nothing in them ...if someone this is not Als...what In world can cause this other then this?
 

4jcobb

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my testosterone was also low at 247... can that cost massive muscle loss and twitching?
 

vickim

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The cpk test should not have been done right after the emg. It can cause the cpk to be elevated. So I would imagine your cpk is normal. If you are that worried get a 2nd opinion.

Then you can put your mind at ease about als. Als does not attack the body as a whole.
 

Alyoop

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You still have not said what abnormality if any, was found on clinical examination.
Losing that much wait seems commoner here on people stressing about ALS, than those who have it. Stress can cause massive weight loss. Atrophy just does not occur that quickly, which makes me wonder whether your atrophy is perceived by you rather than your neurologist.
 

4jcobb

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it wasn't perceived. I lost muscle, plain straight muscle..all my bones and joints crack cause of the muscle loss. I lost 2 inches off of throat and muscle from face and everything. feet I can pull the skin so far up and also on hands..I dumbfounded also..is there anything that can cause muscle from inside your mouth to atrophy and eyes..I can't seem to find it..that's why i think andnp my wife thinks its als. what else option could it be...even my cpk was high..help me someone please...I'm going to get a will up and life insurance up soon....is there any Instance of Al's happening in four weeks from perfectly fine to all muscle loss and twitching till this day and 15 pound loss..I experience so much pain in the morning from either my muscle bones or joints its unbearable
 

4jcobb

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he said everything was fine but one thing on ncv was that he asked me if I hurt my back and i said yea in 2006 and he said cause on of the things things just very slightly off and has to do with site nerve probably..but he said i dont have Als or any mnd or peripheral nueropathy but I'm going to get a 2nd and 3d opinion also
 

clichti

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Maybe I'm missing something - if all of your muscles are atrophied, how can you do all of the things you describe, like running, etc.? That simply wouldn't be possible.

Also, what other investigation did your neurologist recommend? Sounds to me like some, or potentially all, of your issues could be related to your back injury. An abnormality on the NCV portion of the testing does not have anything to do with MND.

Bottom line - if these atrophied muscles you describe we're the result of ALS, the EMG, and for that matter the neurologist, would have picked them up. Of course no test is perfect 100% of the time, but EMG testing is extremely sensitive, and often will pick up issues before you even know about them. Most definitely once they've progressed to be symptomatic.
 

4jcobb

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no I'm not hyperchondriac..I lost muscle and alot of it. my hands chest legs and feet are skin on bones.i was built now I'm flabby and fat is gaining on my stomach.i lift weights and it does nothing ..i just need help..is there any disease that would atrophy all my muscles at once like this..i only found one person on the entire Internet that experienced what I have and there getting worse and worse with no diagnosed.. complete muscle wasting muscle twitching..but no also?
 

4jcobb

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also my legs and feet and finger are all stiff , I guess cause no more muscle on them..I can even turn my neck all th way to the side its wierd
 
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