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jimbobby

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Hi all and thank you in advance to anyone who reads this and can offer any advice. I am a 41 year old male and have recently started to have symptoms which I am scared may be ALS/ MND or something serious. I cant work or function properly at all and have huge anxiety as a result.

About 6 weeks ago I started having muscle twitches / fascilations in a few places mainly calfs and arms. After around 3 weeks it did not go away and I went to see a neurologist. He noticed that my left calf was smaller than my right and it was enough to be considered 'significant'. I have since measured them both and it is 1 inch thinner to around half an inch thinner nearer the bottom (I would be interested to know if this is normal or unusual too?). My left thigh is also slightly smaller too.

I do not know how long the calf has been like this. Possibly months possibly over a year? I wish I could find some old photos that showed it

We did a range of strength tests and all were fine. However I feel weaker on my left calf but its not enough to fail a neuro test I think. My left calf feels weaker. I am quite active and used to run a few k in the gym roughly 5 days a week . Now i think i can maybe do 1 or 2. My calf feels weak and tingly pretty much all day - i cant properly explain how it feels but it kind of feels a bit numb and achy all the time. I don't know whether any of this would be considered clinical weakness though. The fascilations are now mainly in my left calf although sometimes they appear in various places - all limbs, back, abdominals. They are much worse after exercise especially in calfs.

They did a blood tests, EMG and an MRI. Blood tests normal. EMG came back normal in all areas and they tested all limbs. MRI noted some minor issues none of which i fully understand technically but the neuro said they are not a big problem and do not explain the atrophy or twitching.

I was hoping he would simply say you don't have ALS/ MND but he said you don't have symtoms ' at this point' or words to that effect. His concern is still the atrophy in my calf. When i pushed him he said he didn't think it was MND but still a very low chance? I thought that an EMG after atrophy and twitching would almost definitely find something??

Based on the above can anyone offer any words of advice as to my symptoms. Is it consistent with ALS or are there any other conditions that it could be. Is there a risk I did the EMG too early?

They gave me an official verdict of BFS but i sensed it was only through lack of alternative and they asked me to keep an eye on my symptoms. Now i am just dreading any new symptom

Any help or advice would be gratefully received thank you so much
 
We have a post that answers all your questions and is our official position. Please read this, we put a lot of time and effort into creating it.
https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html

You have nothing that would point to ALS.

No one symptom alone is ALS - smaller muscles on one side without knowing if they always were is less than diagnostic.

You have been cleared, but I'm guessing you are to go back in 6 months or so for another check. That's pretty normal with BFS.

All the best, you are highly likely to be just fine.
 
Hi Jimbobby

I used to sew a lot, I knew all my measurements before this started, my right thigh was always 3/4 of an inch bigger than my left thigh that was normal for me, we all have differences. It is now 3 inches smaller than my left thigh, you can only judge if you have a baseline to start with.

I made costumes for dancers, they are athletes with very strong toned bodies. Having an inch difference in measurements is common. They also quite commonly have cramps and twitchy muscles, nothing that worries them, just a result of training. If you are going to the gym five days a week you could look at hydration diet and workout combinations to see if that is having an effect. But try not to worry about an inch difference that isn't getting worse over a long period.

You didn't have the EMG too early, my EMG showed abnormalities in areas that I felt were totally normal with no symptoms at all.

I hope this reassures and wish you luck for the future.

Wendy x
 
Hi Tillie

Appreciate the reply and I can see you have to deal with an awful lot of people with no concrete symptoms so it must get quite wearing. If I had no atrophy (as described by an experienced neurologist) and some weakness I would not be so worried. Also the twitching is somewhat different - far lighter and concentrated in the left calf than elsewhere. Anyhow I shall keep an eye on it. All the best and thanks again for taking the time to reply

Bobby
 
Hi Wendy

Thank you for your reply. Yes I have no idea how common or not such differences are - my neurologist seemed to think its quite a large difference and this scared me. My left calf is less thick and also shorter so the overall look of being smaller is quite clear now I am aware of it. That's reassuring about your sewing work in the past - thank you for sharing that. I am not doing as much gym work now but hopefully I can someday - I will look into your diet suggestion too

Thanks again Wendy and all the best to you ,

Cheers
Bobby
 
I would consider getting a second opinion on the mri images. I know someone who was initially told minor then had the images read by another radiologist and it was very different. He ended up with surgery.

Did the neurologist use the word atrophy to describe your leg ? As Wendy says people can be very different side to side but that is not atrophy. If it is atrophied there are other causes including spinal. Yes your mri showed only minor issues ( see paragraph above) but your EMG was normal
 
Hi Nikki

Thanks for your reply. Yes the neurologist used the word atrophy. Initially he said the size difference he felt was significant and then on my referral letter he wrote mild atrophy - but he used that word unprompted by me in the exam initially - I wasn't really aware of it. He didn't really spend that much time on my MRI and I have since read it and has a number of things on there that I don't really understand but when I go online can all cause pain, discomfort, tingling etc. He didn't think it was a cause of the atrophy though?
 
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