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over a year and still no diagnosis> This could be ALS i think

Hi.  I am a 22 year old normally fit male who has been experiencing neurological symptoms for over a year now.  Despite these neurological symptoms that are persistent i have had no diagnosis.  

My symptoms started with chest pain on the left side of my body.  This progressed to having pains all over my body which were of a sharp nature and unbearable.  These pains would strike with no warning.  As well as this i had continuous saliva with yellow phlegm and constantly coughing from my chest.  At this time i had a CT chest, CT sinus and extensive blood tests which all were normal.

As time went on about 5 months later i started experiencing a weird fatigued heavy feeling in my left leg which never went away.  This feeling progressed to my left arm and hand.  My muscles in these areas feel tight and stiff when used and have an abnormal feeling that is difficult to explain constantly. After a few months  i started experiencing twitches in my calves.  This gradually spread all over my body including my face for example.  It has got to the point where it hurts my arm to brush my feet because of the tightness.  Furthermore i have a tremor which was in left hand and is now in right hand.  My muscles feel weaker.  I used to go to the gym all the time.  I can't even walk 100m now without my calf tightening and feeling stiff.  I went to a neuromuscular specialist who carried out a neurological examination, EMG and brain scan.  All were normal.  He suggested it would just go away and that it could be mental which offended me.

He reassured me that it wasn't ALS but i don't believe him as i know ALs can take years to identify and is a very difficult illness to diagnose.

I saw him again and her carried out a creatine kinase test.  This revealed a ck level of 2000.  He then pursued with a muscle biopsy which was normal and repeated ck levels twice which were normal.

I then had another emg which revealed mild peripheral nerve hyper flexibility.  Nothing has been done about this as he believes there is no underlying neurological illness.

Within the last 5 months i have also become breathless and short of breath with difficulty clearing throat and swallowing saliva.

I know there is something wrong with me and that i have an illness.  Any suggestions would be great.

Many thanks
Tom
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Avatar universal
Thanks for comments.  So is there no way peripheral hyper flexibility can be ALS.  WOuld the EMG of showed different results.  Why can i notice weakness, i.e. not keep hold of things for long with out being in pain and legs being stiff but neurologist can not detect this?
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Avatar universal
Negative EMG indicates NOT ALS. A peripheral neuropathy with unknow origin is a possibiity. Unknown usually means that the origin is viral. Had similar symptoms for 15 months but now getting better slowly.
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1699033 tn?1514113133
Also, I just want to say that you absolutely have to advocate for yourself.  Nobody is going to do that for you.  They are going to say "It's not this" and then send you on your way with no direction.  

I came down with an infection that caused me to have severe joint pain.  I was having shooting pains coming and going (arthralgia)  in most of my joints.  I went to one clinic....they had no idea...I was sent home.  My fingers became swollen and they weren't bending the same as they used to.  Went back to the same clinic....no idea.  Eventually I could barely walk.  I went to another walk in clinic and they said I had scarlet fever.  I didn't have a doctor at the time.  I finally went and got a doctor and saw him, explained my symptoms, and he said "your fingers don't look swollen to me."  I could have punched him.  I'm not an idiot, I knew they were swollen just by the way they felt.  Anyway, I insisted to him I had strep and that I needed antibiotics (I was getting ready to go away on vacation) and besides that I could barely walk because of the pain in my joints.  He did blood work and called me and said  I was right.  I had a strep infection with no strep throat symptoms that went straight to my joints, causing scarlet fever and then rheumatic fever.  

I know you are frustrated but you have to rule all other things out first.  I have anxiety, I know what the mind is capable of and that you can come down with real symptoms of diseases that you are anxious about, but the only way to really say it is anxiety is to rule everything else out.  
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1699033 tn?1514113133
I still think you should visit an infectious disease doctor.  

The following is from a lyme website

http://www.anapsid.org/lyme/lymeseroneg.html

I'm not saying that is what you have.  Obviously I'm not a doctor.  But if I were you, I would be at the infectious disease doctor to see what he/she thinks.  
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Avatar universal
Any more input from anyone would be valued?
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Avatar universal
  Thanks for your comment. Wouldn't limes have gone if i had been on anti- biotics.  I had lymes test which ruled came back negative.  Are there any other infectious illnesses it could be?
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1699033 tn?1514113133
This is coming out of the blue, I'm sorry, but have you thought about seeing an infectious disease specialist to see if it isn't something along this line such as advanced lyme disease?  

Anxiety can cause a lot of symptoms that people are really unaware of but you can only chalk it up to anxiety after all other possibilities have been ruled out.  
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Avatar universal
Any suggestions or comments would be appreciated
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