Road to diagnosis question

[Dondon]

I have a question about the path people took to an eventual diagnosis. I’m a 57 year old lady and I really don’t have health anxiety. I started having constant twitching in both calves about 4 months ago. At first I chalked it up to menopause. It started disrupting my sleep so I saw a neurologist who did a nerve test, blood tests and an emg. He diagnosed me with bfs and suggested cutting out caffeine, stress, etc. I did all those things but my calves are still going full force all day. My husband jokes that it’s like the dancing fountains because it jumps all over both legs at the same time so it could almost be to music if that makes sense. Not exaggerating when I say 24/7 nonstop. I ave no other symptoms I’ve noticed but I don’t go measuring for atrophy or anything. The clinical exam at the neuro was fine 3 months ago. Does MND ever start like this? A friend told me that twitches can precede weakness etc. especially if they are constant in both calves but they aren’t a doctor.

 

[Nikki J]

Calves are actually the most common hotspot for benign twitching. Your friend’s statement is wrong. ALS twitches are the distress calls of dying motor neurons and ALS starts in one place ( say right hand just as an example)

The usual sequence in ALS is weakness, then twitching then atrophy. It is rare to twitch first and you are not in the risk categories of sod1 carriers or elderly men. It is rarer for even those to have a normal exam and emg

Some people find magnesium helpful if you have no contraindications. Also ignoring them as much as possible but bfs is something people often have to live with.

 

[lgelb]

You could consider a few drops of Mg lotion on the hot spots and therapeutic massage/Pilates/tai chi/warm-water swimming. The calves can get tight and jumpy and need a reset, especially if your activity levels or sleep have changed recently. If applicable, working on your sleep may also help.