Being Referred to An ALS Clinic (23M)

[ChaseF]

Abnormal EMG in two limbs, progressive muscle weakness, and muscle fasculations are the reason for being referred. No official diagnosis yet but Neuro said ALS is on the table. Im terrified, scared, and feel like my world is collapsing around me knowing that ALS could be the diagnosis. Also working with Rheumatologists too. Im so scared.

 

[Nikki J]

Emgs can be abnormal in many ways do you have the report? If you post it with your name removed we could comment better.

where are they sending you?

 

[ChaseF]

I do not believe I have access to the report itself. He is sending me to a neuromuscular doctor for a second opinion and that while low, there is a chance it could be ALS. I'm in Virginia Beach

 

[Nikki J]

You have the right to get your report as you have the right to any part of the medical record. I encourage you to get your own copies of everything Should the neuromuscular not rule out ALS please seek another opinion from an academic medical center ALS Clinic.

other causes of your symptoms are far more likely statistically and it sounds like your emg was far from definitive. Without knowing specifics we can only say good luck and let us know how your appointment goes

 

[swalker]

Hopefully, there will be some other diagnosis that explains the EMG.

In the meantime, do as Nikki suggests. She is absolutely right. You not only have the right to the EMG report, you absolutely should have your own copy of it and all other important medical records.

Don't trust the healthcare providers to have quick and easy access to your medical information. The healthcare system in the US is broken in many ways, and one of those ways is the maintenance and communication of medical information across different providers

Take control of the situation and maintain your own copies of EMGs, radiological studies, lab results, etc.

That has been my experience.

Steve

 

[ChaseF]

Hey everyone, was finally able to get into my records there. I did not have the exact EMG recording itself but did the notes. "Mild active denervation found in multiple muscles and mildy brief reflexes. Early motor neuron diseases need to be ruled out." The clinic did not deem my case urgent and will be unable to see my until September. Meanwhile I've just been getting weaker.

 

[Nikki J]

Your report should have a page with the tested muscle going in a downward column on the left and then going across categories stsrting with fibs, the psws and so on. Seeing that would be helpful. Thesummary is vague and the fact the ALS clinic deemed it non urgent makes it seem that there was not a lot of als concern

 

[KarenNWendyn]

You said you are being referred to an ALS Clinic, hopefully to see a neuromuscular specialist. That would be the next step, but please take comfort in knowing many other more common conditions are possible.

Keep in mind that what is important when it comes to diagnosing ALS is the big picture: clinical weakness as determined by a physician, characteristic EMG changes in multiple muscle areas, upper motor neuron signs, evidence of disease progression, and ruling out ALS mimics.