Update after Neuromuscular Specialist Appt.

[Swilliams921]

I just wanted to give one last update after seeing a world renowned neuromuscular specialist at an ALS clinic. Shockingly, I got into to see him in TWO days and then had my EMG (my third) with him one week later - I know this NEVER happens so I feel very lucky.

My clinical, reflexes were all normal and my EMG was clean. In fact, he did NOT agree with my previous EMG at my local neuros office back in April which showed PSW's and did not agree with his impression. He was also second guessing the way the test was performed. My point here is - I feel it's VERY important to be seen by a neuromuscular specialist that knows ALS very well if you are at all sincerely worried about a possibility of having this disease.

I have had symptoms for about eight months now with still no clinical weakness. With that being said, I still do not have a diagnosis, but I know that today I do NOT have ALS. I told my doctor that I would believe him whatever the outcome is - And I do. He did however say he would see me in three months to reassess - so that is my plan for now.

Thank you to all who responded and offered some insight - some a little harsh, but I get it and appreciate it

 

[lgelb]

Thanks for checking in, SW, and glad you have gained peace of mind in re ALS.

Best,
Laurie

 

[Swilliams921]

Laurie - I have one last question before I log off of this website. I'm directing this question to you because you posted something awhile back that always comes back to me and I don't understand - Just need clarification. Everything I've always read and have been told is that weakness precedes atrophy. But you said that atrophy could come first. Can you explain?

Yes, I have been cleared with a normal EMG, but no one can explain to me why I have muscle loss from literally head to toe. And I have no weakness.

Thank you in advance for your time.

 

[lgelb]

Hi, S,
To clarify, I said atrophy can come first and it is true, but would be in very close proximity to the weakness, not the several months that you have had.

I'm not sure of the magnitude of your atrophy and whether it is muscle converting to fat or your losing the weight entirely, but I would find a diligent internist who is willing to work you up for systemic illness, now that you have been cleared of neuromuscular disease. It could be something as simple as a thyroid issue, diabetes or a dietary imbalance.

Best,
Laurie

 

[Lkaibel]

Thanks for returning and updating. It shows people who have some pretty crazy symptoms that most of the time it is just NOT ALS.

 

[Swilliams921]

Thank you so much.