ALS Support Community

Ya I guess I’m just waiting to see how bad it gets

Did your mum have other problem areas in the beginning? Or was it just the arm then the other arm etc, did it follow the pattern that everyone on here says it does?

Exactly what F1 said before! Absent reflex’s, twitching and atrophy. It’s a no brainer! But the specialists aren’t saying that because they would rather wait until he can’t walk or talk! Then swoop in and state the obvious, when it’s to late for clinical trials etc! It’s like there all living in the 90s and haven’t done a single bit of research since they graduated

One arm til it basically didn’t work , then other arm for a couple years , then legs and neck and finally voice

But from what I’ve seen it can go arm then leg , both hands , voice to hand , there’s a million ways it can happen , another reason it’s hard to diagnose

Yeah It can go in any direction! But she didn’t have multiple areas declining at once?

It’s probably to hard for you to answer, it’s something the patient them selfs would only know those fine details

i wish i could ask her, I was her care taker and its still hard to explain, she did have a couple random falls at the beginning , but none of us knew what was going on

@Arran sent you test mail

@AlwaysLivingSca thats exactly what they diagnosed me with based upon EMG findings. A radiculopathy, however, I have no pain and two mris show there isn’t a pinched nerve it’s frustrating. The ppl here in this forum said there’s no way I can have als. I call BS in that as well as the diagnostic findings based upon EMG. I even saw a back surgeon to be safe. He said he sees no

reason for surgery and this is his quote “sounds like a motor neuron issue to me”.

P.S. sorry for the loss of your mom @AlwaysLivingSca. That must have been extra hard on you being her caretaker as well. You’re a strong man.

Everydays a gift and you have to live every moment like it’s your last

Thanks fasic sorry I just jumped into your guys convo , but we’re all in a similar boat

How long have you had symptoms?

26 months

I had 2 clean emgs by the head of neurology at Kaiser , I knew it had to be some nerve *** , so I left kaiser and got good insurance and went to a different neurologist , he did emg , it was dirty , he diagnosed parsonage turner

Do you disagree with the parsonage turner diagnosis?

I think it’s pretty suspect , my mom had als , then I somehow get an even rarer neuro disease with similar symptoms and emg results , no way to prove it just wait and see

But was your mums genetic?