ALS Support Community

a few weeks ago, they woke me up at night. Now I’m taking two prescription sleep meds and melatonin and am finally sleeping well which has resulted in about a 25% reduction in twitches during waking hours.

As Aaran said, the EMGs have been frustrating. Still no answers.

Ughhh. Ik my age is a good sign and how i have no weakness or atrophy, but other youngsters get it too so its not impossible

But i think you guys should trust the emg (ik its hard) bc u guys have had so many, i wish i have and i have a feeling when i do it wont be good. But ik when if it does come back clean im moving on and never looking back, if i do develop anything then i wanna enjoy my time left but my anxiety rn is whats killing me.

I’ll put money on it that your emg will be fine! And your right young people can get it, but at your age! You would have to have had it in your family, and it’s not that I don’t trust the emgs, it’s the disease I don’t trust, because it’s so good at hiding in plain sight, no moderen technology on its own can rule it in or out

I dont have it in my family. But idk i feel like its there hiding. I feel like i have atrophy above both knees (symmetrical) and that i find it hard to stand up straight for a while

Hey guys , you all had dirty emgs? I had to clean ones by an als specialist in aLs clinic he said were normal , and I was crazy , left Went to a different Neuro dirty emg , this whole thing is really weird , amazing what a guessing game neurology is

Hey guys , you all had dirty emgs? I had to clean ones by an als specialist in aLs clinic he said were normal , and I was crazy , left Went to a different Neuro dirty emg , this whole thing is really weird , amazing what a guessing game neurology is

My first two EMGs were totally clean. My third only showed chronic denervation in one muscle. My fourth and fifth were pretty much the same, with active denervation in one muscle and chronic denervation in five muscle.

What did they say the reason was ? I got a parsonage turner diagnosis last week , but idk if I fully believe it

They gave no explanation. I’ve had four different practitioners do the five EMGs. I’m headed to Beverly Hills in a week and a half for number six. My last neuro appt said she thinks I have MMN and wants me to trial Ivig, but I don’t believe I have MMN, so I’m getting a second opinion. I’m fairly confident I have als/PMA. They say here an EMG can’t be done too early, but with my progression

from EMG 1-5, I’m apprehensive about the statement they can’t be done too early. My Tibialis anterior is almost dead and two lumbar mris don’t show any cause for it.

Hi. How are you doing? Any nearer a diagnosis? I have lots of wasting too. Now have what seems similar a frozen shoulder and getting weaker everywhere.

I’m the same as you. My muscle atrophy worsens by the day, but still no diagnosis. I was supposed to see me new neurologist again for a follow up last week and potentially another EMG, but due to coronavirus, the appt was canceled.

I think we’ve messaged before on another forum. How long since your wasting started now? Suppose no diagnosis is better than the worst there can be but still scary not knowing. I’m terrified now that my shoulder has seized up.

I did reply but not sure if it worked. My muscle wasting is both sides and most within first two months.

Have you had an EMG yet?

Not yet. Going through a slow process

Apparently it’s rare but 1.8 per cent of MND starts with wasting first. Let’s hope we don’t fit into that small percentage hey.

Are you referring to Progressive Muscular Atrophy or LMN Onset ALS, when you state that 1.8% of ALS starts with wasting first?