21/02/2023

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Sam199204

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Joined
Feb 21, 2023
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6
Reason
Learn about ALS
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00/0000
Country
UK
City
Millom
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.
 
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.
 
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
 
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.
 
thanks for clarifying, as noted NCS would be normal with ALS. Chase it up as it is likely something that can be treated.
 
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.
 
I hope you get seen soon. Do let us know what happens.
you really need an emg to sort this out. good luck
 
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.
 
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
 
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
 
Thanks for your reply no date for an appointment yet, I’ve been having symptoms for nearly 10months now
 
Do you have the resources to get an emg privately?
 
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