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seb88

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Hi - I want to thank you in advance for any advice and replies.

I’ve had twitches since December and I’ve read the stickies but my twitches are also accompanied by brisk reflexes, a stiff right calf and tremors when I flex a muscle. My right calf is also aprx 1cm smaller than my right. I’ve no idea if this is normal? Surely atrophy would come before weakness? My right calf is much stiffer than the left but I’m not sure if this is classed as spasictity?

I am just not sure if I should be worried or not really. I don’t have any noticeable weakness, definitely not any clinical weakness but the twitching is all over both legs, occasionally other body parts but mainly my legs my right calf is noticeably smaller and my reflexes are brisk, albeit bilaterally. The one time I really notice the twitching is straight after I get back from a walk when it’s more in the upper thighs and last for aprx 2 minutes.

I’m not sure if the tremors are related because I’ve had these for a year but thought would list them here for full disclosure. I’m seeing a neurologist in 2 weeks. Any advice much appreciated.
 

Nikki J

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Yes it is completely normal to have different sizes. 1 cm is a tiny difference anyway.
no you are incorrect. In ALS weakness comes before atrophy. Usually significantly before
only a doctor can tell spasticity but tightness is a common complaint here and usually comes to nothing
bilateral brisk reflexes are a normal variant and exacerbated by worry

tremors are not worrisome for ALS
 

seb88

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Thanks for your reply Nikki. Sorry I did actually mean to say that surely weakness comes before atrophy, that makes much more sense logically!
Do you think I need to be worried about the leg twitches in general but particularly after walking? Thanks again for your reply, I really do appreciate it. I will of course update after I’ve spoken to the neurologist.
 

Nikki J

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As it says in the pinned post twitching without clinical weakness is not worrisome. Twitching after exercise/ activity is particularly common
 

seb88

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Hi, I just wanted to post an update since I’ve seen a neurologist today. The neurologist performed a very thorough clinical exam and doesn’t think it is ALS. He said he can’t be 100% sure but he would put it in the high 90s that it isn’t. The clinical exam was normal. He’s ordered an EMG which I need to wait a couple of weeks for as it’s with a different doctor and some blood tests. A couple of questions:

1. Presumably I can be really reassured by this or is really the only way of getting complete reassurance the EMG?

2. Does anyone know if you get the EMG results at your appointment or do you have to wait for a follow-up appointment with your neurologist? For context, my EMG is being done by a consultant in clinical neurophysiology.

Many thanks for any replies in advance!
 

Nikki J

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Doctors are very reluctant to say never. When they say things like you were told it is probably as close as they ever say. If you have a normal exam you don’t have upper motor neuron signs which are required for an ALS diagnosis and you don’t have clinical weakness. One of the Oxford MND doctors was once asked what he would think if someone with a normal exam had an abnormal emg. His answer was something like I wouldn’t do an emg without an abnormal exam and clinical weakness but if I did I still couldn’t/ wouldn’t diagnose ALS

whether you get immediate results depends on the doctors and their protocols. Do not read anything into it if they don’t tell you anything.
 

seb88

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Thanks Nikki that is very reassuring. And thanks for coming back to me so quickly, I really appreciate it. Sorry I also forgot to ask whether the EMG can tell the difference between ALS and other spinal problems? From a previous MRI I know I have disc degeneration in the cervical spine with posterior disc bulge at C5/C6 with slight impingement of the exit foramina and slight indentation of the cord at the same level. I just don’t want the EMG to come out abnormal and to be worried it’s ALS when it could be down to the above!
 

Nikki J

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Yes it will look different. Your emg may well show the spinal issue and it is incredibly important to realize that all abnormal emgs ( most of them) are not ALS. We often see people here whose emgs show a spinal issue yet they refuse to accept that and are convinced it is ALS in spite of the doctors saying it isn’t. Don’t be that person
 

seb88

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I feel quite emotional writing this post but the thing that annoys me about this forum is all of the DIHALS who write their posts and don’t update when they’ve been cleared. I was sat there thinking these symptoms sound like mine, what happened to them?!

Anyway! I don’t have ALS!!!! I had a clear EMG this evening. And as Nikki writes, who I cannot thank enough for her wise words, I will not be one of those people who questions whether the EMG has been done too early or incorrectly etc etc. I will never give this a second thought again, except now I will have such an appreciation for all of the PALS and CALS and the next time I see some sort of appeal for an ALS charity, I will donate and the next time I hear a story about ALS research, I will read it.

I hope so much you all get the cure you so very much deserve. Thank you for maintaining this forum it was so helpful when I had strange symptoms. To all of the DIHALS reading this, you probably don’t have ALS. My advice to you is if you get odd symptoms like I did go and see your doctor and get peace of mind! I hate running but now I’m actually going to go for a run tonight just to appreciate my muscles and what they can do!
 

Nikki J

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Congratulations. Thank you for letting us know and your kind words. Enjoy your run!
 

Bestfriends14

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Awesome news! Enjoy your run ❤❤
 

seb88

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Sorry to be back here posting but I had an odd conversation yesterday when explaining to a friend about my recent health scare.

He raised concern that the doctor hadn’t EMG’ed my bulbar muscles despite my having twitching on my lips and occasionally getting the feeling of food being stuck in my throat. I gave myself a quick once over and I can move my tongue normally, apart from when I stick it out the left side is slightly slimmer and my tongue goes ever so slightly to the left. It could have been like this forever I have no idea!

Anyway, I have my follow-up with my neurologist on Thursday so wanted your advice as to whether I should mention this to him.

If I had bulbar onset would I’d have shown up on an EMG on hands, arms, legs and feet?
 

Bestfriends14

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You don't have ALS and no signs of anything close to bulbar. I thought you were going to be grateful for the good news of not having ALS? Be grateful. Move on from this forum and don't look back. For your own good.

Take good care
 

Clearwater AL

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Seb, your question....

"Anyway, I have my follow-up with my neurologist on Thursday so wanted your
advice as to whether I should mention this to him."

Answer... better him than us..

Being today is Thursday you may mean next Thursday. Until then...
 

seb88

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Thanks both. My appointment is next Thursday. Would any bulbar issues have shown up on my EMG? I don’t really want to raise this with my neurologist if it’s a non point as Bestfriends14 suggests!
 
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