Does this sound like ALS?

[Lizzypip68]

Hi everyone, I'm very new to this forum and would very much appreciate any advice you could give me regarding my ongoing symptoms....
I first noticed fasciculations in my left calf 3 months ago and within a week was aware of them pretty much everywhere. In truth I think they have been going on for quite a while as I've been aware of odd buzzing sensations for ages but hadn't realised what it was until putting on a pair of shorts for the first time this year when I noticed the calf fasciculations.
I visited my GP who did a brief strength test, acknowledged the presence of fasciculations but dismissed my concerns as stress related. after a few weeks of increasing symptoms I decided to go and see a Neurologist privately. He talked to me at length then examined me on a couch where he watched my legs and arms whilst tapping them periodically to check reflexes. At the end of the appointment he diagnosed BFS saying my legs were strong and he was 99% certain it was BFS but suggested follow up nerve conduction tests.
Since this time I have noticed atrophy in my left calf (which measures one inch smaller than the right) and also at the back of my ankle on this same leg. I went for the nerve conduction tests last week and the atrophy was noted by the technician and also I struggled to complete the test due to severe cramp every time I had to push my foot down. At the end of the test he advised that the result would be 7-10 days but that he had noted the fasciculations in left calf and occasional ones in the right side. He asked about previous back problems (2 microdiscectomys 9 years ago) and said that some symptoms may be as a result of this. I asked if I should stop worrying about MND and he hesitated for a few seconds before finally saying yes.
Do my symptoms sound like MND? I have read that it can't be BFS if you have atrophy but also at this point I do not have any clinical weakness and wonder if that would show by now with MND? I also have pain throughout my left leg from the hip to the ankle which is constant and a buzzing sensation in my leg and foot. Any insight would be greatly appreciated and thank you for taking the time to read this.

 

[Atsugi]

I wouldn't leap to the rare fatal disease based on on what you wrote. The GP and the neurologist considered it, but didn't order an EMG to look for the type of damage that MNDs do to the nerves.

In ALS, first there is damage to the nerves in the brain and brain stem, and then later the nerve can't send signals to its corresponding muscles, so the muscle doesn't work anymore, forever.

If you are still concerned you might have a fatal disease, then run, don't walk, to get an immediate appointment with a world-class specialist. But your post didn't sound like MND.

 

[Lizzypip68]

Thank you for your reply. I did have an EMG along with nerve conduction tests but have no results as yet. The neurologist recommended tests as confirmation of his provisional diagnosis of BFS but the calf and ankle atrophy was not noted by him although the man who performed the nerve tests/EMG three weeks later spotted it straight away. I'm therefore confused as to why the neurologist did not mention it despite looking at my legs - I had noted it at this point but because the neurologist did not comment on it I had decided that it must be insignificant. Following my EMG/nerve tests and the technicians comments I am now very concerned as to the significance of this although, as previously stated, he did say that I should stop worrying about ALS - hopefully that means he didn't pick up anything else that was worrisome.
I really want to know if it was ALS related atrophy would I have clinical weakness by now or could the atrophy come first? Any insight would be very much appreciated.

 

[ShiftKicker]

There really is a difference between atrophy and normal variation in muscle size from side to side. Unless you had a baseline measurement of your muscle sizes from months or years ago to compare, it's highly likely the size difference is natural. People are generally not symmetrical. Even at my absolute fittest time, I had a 2" difference between my left and right quadriceps muscles. Some people have variations of foot size difference of 2 or 3 sizes. Arm and leg length vary all the time too. Again, you'd have to see a change over time in order to be concerned about a size difference. Atrophy can be detected via EMG, as atrophy means a muscle is not getting the same volume of signal (if any at all) and will show via electrodiagnostic testing. So, the technician may have noted a size difference, but the EMG would show if there's atrophy and not just normal variation.

 

[Lizzypip68]

Hi everyone
I am still extremely worried as symptoms seem to be progressing and would really appreciate any insight....
I had the Nerve tests and EMG - EMG noted fasiculations in my left gastrocnemius with slightly reduced interference pattern and some larger units. Also a very mild reinnervation pattern was noted and left ankle jerk is depressed. Right side showed occasional fasiculations but was otherwise normal.
I have had 2 back surgeries 10 years ago (microdiscectomy L5) and suffered chronic sciatica in my left leg which the technician felt was likely to be the cause of these findings. The report was sent to my neurologist who stated in his letter that there is no evidence of MND/ALS but I am not able to see him again to discuss further until next month.
Since the test the fasiculations in my left calf have increased dramatically and are present 24/7. On occasion the whole of my calf area seems to be "sucked in" and I can also constantly feel a tingling/slight electrical shock sensation throughout my lower left leg and foot. This is much worse when the leg is resting and is causing considerable difficulty with sleep. I also have a lot of pain throughout the leg in my hip and knee and also down the length of my shin and ankle - if I press the shin area it hurts. My left calf is just under an inch smaller than the right and the area at the back of my ankle on the left side has a more prominent dip in it than the right side which I am convinced is atrophy. I have shown this to my GP who did agree but seemed unconcerned. My left leg just feels wrong, very painful with a lot of weird sensations - I can feel the fasiculations constantly and am also aware of some on the right side and on occasion in other sites on my body - stomach, back etc although this is far less often. At this point I am still able to walk, cycle, etc without any sign of clinical weakness but I am in pain and the leg just feels wrong.
Please could someone give their opinion as I am going out of my mind with worry that this is MND/ALS -as I am struggling to believe that my previous back problems could cause these symptoms.
Thank you

 

[lgelb]

Lizzy,

Of course, spine problems can cause leg pain/numbness/buzzing as the nerves run from the spine down to the legs. The EMG does not speak of the massive changes that signal ALS. Therefore, since you have had disk surgery, an imaging study to ensure all is well with the spine seems pretty much called for. It is common for new herniation to develop in the same or adjacent sites from where you had the disk material removed.

However, you have been well-advised that differences in size between your calves and ankles is most often not MND, either.

Best,
Laurie

 

[Lkaibel]

EMGs suspicious for ALS are a train wreck. Chronic and active denervation in multiple muscle group areas, short wave abnormalities, etc. Usually by the time a person is having any symptoms the EMG is very abnormal, but at the least it is somewhat suspicious for ALS nearly always.

I think you have gotten some good advice here- not sounding like ALS and most importantly your Doctors don't think so either.

 

[Lizzypip68]

Thank you very much for taking the time to reply, it's very reassuring. I will keep you updated when I hear more....