For the young ones concerned and anxious

[Noey]

Hey everyone, not really a post of symptoms or whatever i've been feeling but i hope this gives somewhat comfort to the ones who are worrying especially the younger ones.

I was here in this forum a year ago, posting about my worries and symptoms. Later on, I had to transfer to another thread--the thread on those who were newly diagnosed. At that time I was only 23. I am a female from the Philippines. When I went here and posted my symptoms (your typical fasciculations), everyone was confident I didn't have ALS. To get it over with, I went to a neuro, got an EMG, results came in and my neuro diagnosed me with ALS. The doctor who conducted the EMG by the way was one of the bests in the field. I was depressed to say the least. After a few days, relatives who were doctors hooked me up on a second opinion. This new doctor was in total disbelief that I had it. Saying that ALS cannot be diagnosed with just one test. She did some physical examinations as well to look for signs. I also underwent another EMG test. Results of this test came out negative. There were absolutely no findings. The second doctor who exuded so much positive energy was right--I did not have ALS.

Up until now, I still twitch from time to time. But I have learned to just live with it. Maybe I'm just a natural twitcher.

So here are a few tips:
--Stop lurking here! The more you do, the more you'll worry
--Go for a second, third, fourth opinion. This illness is RARE.
--Pray. Most powerful and best thing you could do. When I was diagnosed, I thought I had already accepted it. When I actually heard the diagnosis from a doctor, it felt wrong.

 

[Atsugi]

Well, that's nice. Thanks, Noey.

 

[Lkaibel]

Thank you. A reminder too that sometimes the "experts" do get it wrong. A neuromuscular specialist in Boston, who as part of the settlement remained nameless paid a patient an undisclosed sum because he diagnosed him with ALS due to a drop foot and some twitching and an EMG. The patient planned his funeral, made his will and was contemplating suicide when he realized, three years later that he had almost no progression. Turns out he has MMN AND a leg injury, but it was too late to fix his drop foot surgically, though the MMN is treatable.

Where the specialist was negligent was in failing to run further test or refer the patient to an ALS specialty clinic. It happens, buyer beware.

 

[Nikki J]

I am so happy for you Noey

Thank you for returning and telling us. Thank you too for ensuring your forum interest is accurate

Wishing you a long life and much happiness

 

[Noey]

Thanks as well, Nikki. You guys are doing such an amazing job. The least I could do is actually just share my story. That misdiagnosis DOES HAPPEN. Perhaps rarely but it does.

 

[Noey]

Yes. I had a neurologist and a neuromuscular specialisy (neuromuscular specialist has been in the field for more than 50 years. She was very old) with ALS. All it took was a second opinion to turn that around. Misdiagnosis just happens.