21/02/2023

[Sam199204]

Hi all, I have on going symptoms waiting on a an appointment with a neurologist, I’m deeply concerned, I was sent for a nerve conduction test by my gp but no emg she couldn’t order that, the nerve test pick up carpel tunnel in both arms, but what concerns me it picked up a low motor l response from the peroneal nerve in my left leg, I have confirmed atrophy on the ebd muscle on my ankle, I also have a constant twitch on top of my foot, I can wiggle my toes but there definitely weaker than my right foot, I started twitching all over about 8 months ago, and looking at old pictures I have had the atrophy on my ankle since about august. I was sent for an mri of lumbar spine, I have suspicions of compression at L4-5 with degenerative disc disease and early straightening of lumber spine. Im truly sorry to bother you all but the anxiety is killing me I have 2 young children and the fought of leaving them is destroying me. Iknow you can’t diagnose me just looking for some support. Thanks for your time.

 

[affected]

Hi Sam
You didn't actually ask a question.
I gather you are worried you have ALS.
It sounds like they have a working diagnosis that has nothing to do with ALS.

Work with your doctors, and make sure you reach out to them about your deep concerns and get things cleared up.

 

[Sam199204]

Hi it’s my NCS that’s us worrying me, my docter has said she doesn’t know much about it and I’ll have to wait for a neurologist, waiting times on the nhs are crazy which doesn’t help

 

[Nikki J]

Ncs abnormalities point away from ALS. Not sure exactly what you mean by low motor response but it is quite likely a clue to a non ALS diagnosis.

 

[affected]

thanks for clarifying, as noted NCS would be normal with ALS. Chase it up as it is likely something that can be treated.

 

[Sam199204]

Thanks for the reply I believe it’s the peroneal Cmap that’s reduced picked up on ncs, I had a docter appointment yesterday, he said there atrophy to the side of my ankle ebd muscle and weakness, he trying to push my neuro appointment through, I can walk on my heels but I can feel my left foot starting to pull down slightly, I’m very afraid of what’s going on I don’t believe it’s good, I have constant twitch on top of my foot it looks like it’s on the tendons to the toes, I’m 30 years of age with 2 young children and absolutely terrified, it seems like the full left side of my body is different to the right side, thanks for your reply’s.

 

[Nikki J]

I hope you get seen soon. Do let us know what happens.
you really need an emg to sort this out. good luck

 

[Sam199204]

Thanks, I will let you know, I’m praying it’s something else but my gut feeling is terrible, my heart goes out to you and anyone else in this position to such a horrible disease.

 

[Sam199204]

Hi all, I’m still awaiting seeing a neurologist, I was just wondering if it’s possible to have weakness on the left side with out failure anywhere yet? I also seem to be taking in lots of air well drinking, I have atrophy to a foot muscle, poor dexterity in my left hand and random speech problems, I keep getting a strange feeling down the from on my fibula to, thanks for your time

 

[Nikki J]

True weakness is really failures albeit they may be tiny ones at first. do you have an appointment scheduled yet? I know things are very difficult there right now. I have a relative waiting for an urgent but not emergent surgery that should have already happened but they don’t have a date yet so I do understand

 

[Sam199204]

Thanks for your reply no date for an appointment yet, I’ve been having symptoms for nearly 10months now

 

[Nikki J]

Do you have the resources to get an emg privately?