Am I heade toward an ALS diagnosis

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tsak

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Greetings to all! I am a first time poster and I want to thank you all in advance for your patience with me, my poor speeling and for any knowledge/support you offer!

I have not been officially dianoised with ALS! I am concerned though that it is just a matter of time. I have been to the rhumatologist, hematoloigist, neck and spine clinic, laryngologist and the nuerologist. Last EMG results as follows:

EMG evidence of bilateral, chronic L5 and S1 radiculopathies. The absence of any fibrillation argues against the diagnosis of motor neuron disease.

I have atrophy and weakness in shouldrs, neck, arms and legs. Nuerosugen has ruled out neck/spine as being responsible, hematologist ran all auto immune tests(I think) and found nothing. Laryngologist found atrophy on vocal coards.

Doe it sound like ALS jut waiting for someone to say it is? Nothin has failed yet but I feel like that is where it is heading. Nuero doc tells me I can go back to the gym and work out but my arms burn and ache just caring in groceries.

Thank you for your thoughts and God Bless!
 

KimT

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So your EMG doesn't support an ALS diagnosis.

How much did you exercise before you had issues? Are you overweight or out of shape? Do you have a healthy diet? Have you had your vitamin levels, particularly B-12 and Vitamin D checked?

Inactivity can cause weakness and atrophy.
 

tsak

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Thank you for your reply Kim!

I have not really worked out on a continuous basis for about 3 months. However, I have done this in the past and never really lost strength or muscle mass.

I am on my feet all day at work in a warehouse environment, The job is getting very difficult but you do what you have to do!

I get burning pain in wrists, biceps and shoulders. Neck aches and is sometimes tingles. Legs and ankles seem to be weakening as well.

P.S. in original post I noted my hematologist as having check all auto immune possibilities but meant to say Rhumatologist
 

Bestfriends14

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Hi there,

To help ease your mind, absolutely nothing in your post sounds like ALS. At all. ALS doesn't present with all over weakness, burning, or tingles. ALS doesn't make you "feel" like it's harder to do some thing. You just can't do it, e.g., button a shirt, hold a pen, or take a heel to toe step.

Atrophy comes after muscles have died, so that foot you cannot take a heel to toe step with starts to atrophy after that failure. Not before.

Hope you find the answers you're looking for. It sounds like you have a diligent team of docs around you.
 

tsak

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Thank you for your reply Bestfriends till the end!

Please forgive my inability to understand this. For example, I know I have atrophy in my shoulders and shoulder blades. What musceles have failed?
I was under the impression that the slow progressive proccess of the muscels deteriorating causes the atrophy and leads to the point of failure?

Again, my apologies for not grasping and thank you for your post!
 

Nikki J

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ALS is not a muscle disease. What happens is that the signal to the muscle is disrupted because the motor neurons that control it die. That means the muscle stops working. Once it does not work THEN atrophy sets in because the muscle is not being used. As more muscles lose their signal more muscles fail and atrophy follows
 

Bestfriends14

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Hi again,

No, a muscle not in use atrophies from said lack of use. If you are using a muscle, you continue to keep it strengthened. When you lose the ability to use a part of your body, you are no longer engaging the muscle to keep it strengthened. Therefore, the muscle slowly dies, resulting in atrophy. I'm guessing your atrophy is subjective and not objective? Who said you have atrophy?

Atrophy, to be honest, is not very pretty. It looks like a concentration camp victim. Is this what your shoulder blades look like? If you are still using your shoulders and arms, you don't have atrophy. ALS typically affects a distal part of the body first. Shoulders would be very unusual. A hand or foot would be more typical an ALS presentation.
 

tsak

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I understand what you are saying but my pea brain still is cornfused!

My shoulders are painfull, have become weak and have noticabley begun to shrink due to mucel loss.

My assumption is that the motor nuerons are slowly dying which in theory will ultimatley lead to me not being unable to raise my arm or in other words,failure. I

If the obviuose outcome is failure why isn't it ALS if it is headed in that direction?

Thank you for replying and your patience with my concept graping skills.
 

tsak

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Bestfrioendtilltheend thanks for replying again!

My nuero doc did e some atrophy in the shoulder blades noting the right was more pronounced. No, I do not look like a prison camp person but I know my muscels are shrinking (feels like they are melting away).
 

Bestfriends14

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I'll apologise from the outset, I'll answer this last question but will not continue to feed your health anxiety. You didn't answer my question as to who your atrophy is visible to; it needs to be visible to your doctor. If it's only visible to you, you don't have atrophy.

Pain points away from ALS in the beginning stages, for the most part. Whatever issues are going on for you, they are not heading in the direction of your ALS. I have absolutely no idea how you got such an idea. Absolutely not ALS by the sounds of it.

Please don't ask further questions here. Go to a neurologist who specialises in neuromuscular disorders. Then report back here. I'm quite positive you would be negative for pretty much any ALS symptoms.

Good luck and take care on your diagnostic journey.
 

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There is one line in the EMG that states the absence of fibrilations points away from a diagnosis of motor neuron disease. Motor neuron disease is another name for ALS. Lucky you, that's your get out of jail free card.
Vincent
 

tsak

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Thank you all for replying to my post!
Before I go I do want to point it that my neurologist did say that he saw some atrophy in my right shoulder/blade and my Larengologist(I think that is the proper name) said my vocal cords show signs of atrophy.

Again, my thanks to you all!
 

tsak

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Symptoms prior to failure

I posted with my symptoms for the first time on the forum a few days ago.
I received a few replies (all greatly appreciated)
Saying my symptoms sounded nothing like ALS.

I apologize if i’m out of line asking this but can anyone share what they were experiencing before you reached a point of failure in a muscle?

As always, thank you for your patience and willingness to help educate men
 

Nikki J

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Kindly do not open multiple threads. It says so both in the read before posting sticky AND a separate sticky

To answer your question. Normal life. I fell over because my ankle failed. My sister was unable to button a shirt. No warning.
 

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Please read the post titled READ BEFORE POSTING

I'm sorry we won't give our details here it won't help you at all. You truly don't have ALS symptoms.
 
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