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Lizzypip68

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Learn about ALS
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UK
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Bournmouth
Hi again everyone, I posted on here a couple of months ago regarding concerning symptoms but the thread is now closed; I feel my symptoms are progressing so am posting an update in the hope that someone can give me their insight as I remain very concerned.
On my last neurologist appointment 3 weeks ago he did a full examination and noted muscle wastage in my left calf along with slight wastage along the inside of the same foot, big toe side. Both ankle and knee reflexes were suppressed, and my leg raise was indicative of an S1 nerve root problem. He referred to my EMG test done in June 17 and said the results backed up this diagnosis. At the time he could see fasiculations in my left calf and foot and noted some movements elsewhere but felt these were more like myoclonic jerks; an MRI scan has been ordered which is in 3 weeks time.
Since then the fasiculations have increased in intensity and have moved upwards to include the inner side of my knee/thigh area. These are very strong in intensity and the whole area seems to be pulsing with twitches very visible through my clothes. The whole leg feels like it is plugged in to an electricity socket with the twitching never stopping and varying degrees of pain throughout the day. I am sporadically aware of twitching elsewhere throughout my body, am struggling to sleep and and remain extremely concerned that this progression of symptoms could be indicative of MND/ALS.
My neurologist did say that there is usually no pain with ALS and also that the fasiculations caused by ALS are usually not felt. He was reassuring but as he made his diagnosis based on no evidence of further fasiculations I am terrified that this new twitching alters things.
Please could anyone offer any insight as I am a nervous wreck; I am a 49 year old single mum and obviously terribly concerned.
Thank you so much.
 
I see no reason to suspect ALS, and several reasons it isn't ALS.

First, twitches of any kind, felt or not, are very common to many conditions, and so they are not diagnostic of, really, anything at all.

Varying degrees of pain throughout the day? This points to something else, not ALS.

Muscle wastage? In ALS, the muscles atrophy, but not right off the bat. After a muscle has been unused, unable to move for some months, then it atrophies.

Your EMG did not show any signs of ALS, so that is pretty good news.

Couple important things:
You never mention any disability--inability to do something. ALS is a profound disability, right from the get-go. From all your posts, it seems that you have twitching, buzzing, tingling, cramps, and your legs are not the same size. All that may be a bother, but I don't see the disability in that cluster of symptoms.

You never mention any failure. Your hands work, your feet work, you're walking and doing all the normal Activities of Daily Living, so I don't see any case for ALS, there.

One of your doctors mentioned anxiety. In fact, that's a very real possibility.
 
Lizzy,

The MRI is a good idea to see if your spine problem should be addressed with physio, injections or surgery. Generally, surgery is a last resort if nothing else works.

I don't see MND in this picture.

Best,
Laurie
 
Thank you both so much for your reassuring responses, I really do appreciate you taking the time to reply. Mike, you are correct that I am currently able to function more or less normally at present and it is pain that makes things harder rather than an inability to do everyday things; I will try to focus on being very fortunate that that is still the case and my heart goes out to those who do not have this luxury. Laurie, thank you for your words too and hopefully the MRI will provide the answers...
Best wishes to you and thanks again.
 
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