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Scared this is ALS, please help

.  I understand that weakness and fasciculations together are usually due to ALS.  However when the neurologist does a neurological examination he can't find weakness even though i have the feeling of weakness on the left side of the body.  It almost feels like my left leg is full of led and my left arm is and that the left limbs feel tight and are not contracting/ functioning properly.  Furthermore i have fasculations all day along with muscle jerks and also have pain around the body but only sometimes.  After a clean EMG the neurologist wanted to transfer me to see a psychartrist for somatization disorder.

However i received my creatine kinase results today and they were abnormal.  The neurologist has now postponed the psychartrist idea and wants a repeat blood test done.  if this is still abnormal he wants a muscle biopsy to be completed

If this isn't ALS then what on earth could it be?  It has been 10 months now and still no diagnosis, i'm scared and bored of trying to find out what is going on.

  I find it so difficult how the doctor can be sure i don't have ALS/MND.   Afterall all other illnesses have been excluded as i have had  chest ct, brain mri, thoraci mri, lumber mri and a ridiculous amount of bloods

What are your beliefs on this?

Any help would be much appreciated?

Many thanks
James
4 Responses
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Avatar universal
Did you ever get a diagnosis on this..?
Helpful - 0
Avatar universal
I understand that weakness and fasciculations together are usually due to ALS.  However when the neurologist does a neurological examination he can't find weakness even though i have the feeling of weakness on the left side of the body.  It almost feels like my left leg is full of led and my left arm is and that the left limbs feel tight and are not contracting/ functioning properly.  Furthermore i have fasculations all day along with muscle jerks and also have pain around the body but only sometimes.  After a clean EMG the neurologist wanted to transfer me to see a psychartrist for somatization disorder.

However i received my creatine kinase results today and they were abnormal.  The neurologist has now postponed the psychartrist idea and wants a repeat blood test done.  if this is still abnormal he wants a muscle biopsy to be completed

If this isn't ALS then what on earth could it be?  It has been 10 months now and still no diagnosis, i'm scared and bored of trying to find out what is going on.

  I find it so difficult how the doctor can be sure i don't have ALS/MND.   Afterall all other illnesses have been excluded as i have had  chest ct, brain mri, thoraci mri, lumber mri and a ridiculous amount of bloods

What are your beliefs on this?

Any help would be much appreciated?

Many thanks
James
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2 Comments Post a Comment


colls22  
Nov 22, 2011
To: woody20
hi woody,

well, after a clean neuro exam and clean EMG, i really don't see how it is still possible for ALS to be on the table. EMG testing picks up the disease long before syptoms even appear, so if you're at the point where you actually have whay you're terming to be symptoms, it just doesn't make sense.

if i were you, hi might go onto the ALS forum and post your message to a guy called Wright. he's like their forum doctor, and knows EVERYTHING about specific medical stuff like this.

i presume your neurologist is probably investigating other neurological possibilities - what did he have to say to you about that? Also, when you say your EMG was clean, was it COMPLETELY clean, or were there small things that came up? I ask because I find that people don't differentiate between the two here. And by compeletely clean, I mean zeros and normals all across the board - no fibs, no +waves, no polys, no fascics.
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woody20  
6 minutes
To: colls20
sorry for my late reply.  my first emg. was clean. my second emg came back with abnormal readings with the label peripheral nerve hyper flexibility.  I asked about isaacs syndrome and this was ruled out.   i now have trouble swallowing saliva and difficulty clearing throat. also breathing is becoming harder. i.e. when i am going up stairs or walking.

Still have no abnormal clinical weakness, i.e. normal neurological examination and no wasting.  However my left side feels ike its getting weaker and also my right side is starting to show similar symptoms.

It has been over a year now and still no diagnosis.  Can ALS take this long to diagnose.  ALso with ALS that takes this long by now would they of spotted weakness even if they could not put it down to weakness.  

Also the specialist i see is a neuro muscular specialist with a particular interest in als.  I just know thought that it is a difficult illness to diagnose.

WHat else could this be?

Many thanks

Woody 20
Helpful - 0
Avatar universal
sorry for my late reply.  my first emg. was clean. my second emg came back with abnormal readings with the label peripheral nerve hyper flexibility.  I asked about isaacs syndrome and this was ruled out.   i now have trouble swallowing saliva and difficulty clearing throat. also breathing is becoming harder. i.e. when i am going up stairs or walking.

Still have no abnormal clinical weakness, i.e. normal neurological examination and no wasting.  However my left side feels ike its getting weaker and also my right side is starting to show similar symptoms.

It has been over a year now and still no diagnosis.  Can ALS take this long to diagnose.  ALso with ALS that takes this long by now would they of spotted weakness even if they could not put it down to weakness.  

Also the specialist i see is a neuro muscular specialist with a particular interest in als.  I just know thought that it is a difficult illness to diagnose.

WHat else could this be?

Many thanks

Woody 20
Helpful - 0
Avatar universal
hi woody,

well, after a clean neuro exam and clean EMG, i really don't see how it is still possible for ALS to be on the table. EMG testing picks up the disease long before syptoms even appear, so if you're at the point where you actually have whay you're terming to be symptoms, it just doesn't make sense.

if i were you, hi might go onto the ALS forum and post your message to a guy called Wright. he's like their forum doctor, and knows EVERYTHING about specific medical stuff like this.

i presume your neurologist is probably investigating other neurological possibilities - what did he have to say to you about that? Also, when you say your EMG was clean, was it COMPLETELY clean, or were there small things that came up? I ask because I find that people don't differentiate between the two here. And by compeletely clean, I mean zeros and normals all across the board - no fibs, no +waves, no polys, no fascics.
Helpful - 0
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