How did you know?

[Reglathium]

I’ve had symptoms for a while, I’ve had some GP tests done and I’m on the waiting list to see a neurologist.

Everyday I seem to notice more weakness, more twitching and I’m losing weight. It started a few months ago with my left arm not being as strong, not being able to do everything it once could.

Then my left leg started to feel weak and I couldn’t walk as far or as fast as I used to. In the last couple of weeks I’ve started to feel the same weakness in my other limbs.

I guess I’m wondering what it felt like for other people -whatever it turned out to be?

I don’t know what this is (though I’m having a hard time making it fit to other illnesses in my mind), but I’m now very aware of it. My muscles sometimes ache, sometimes cramp and sometimes feel numb, though never feel completely all right.

The thing that worries me the most though is the progression - it has been constant, especially over the last couple of weeks, and just seems to be getting noticeably worse day by day.

In any case, thanks for reading, I hope I’m wrong and it gets better, though between age, gender and symptoms sadly I feel I’m a pretty good candidate for the disease.

 

[lgelb]

It would be very unusual for ALS at onset to get worse every day. Aches and numbness are not usually part of it, either.

It sounds more systemic to me, possibly post-viral. Try to make sure you are staying up with your sleep and nutrition, and that you are doing bodywork that elongates your muscles (tai chi, ballet, Pilates, classical stretch, etc.), whatever you can do, even walking or warm-water swimming.

I have a feeling that the GP will prove more useful than you might think. But let us know what happens with the neurologist. Try to get on cancellation lists if you can.

 

[Reglathium]

@Igelb thanks for the response and the suggestions, like most people posting in this section I guess I’m really hoping it is something that will get better

I would certainly feel better if I wasn’t having the muscle twitches, but from reading through peoples posts it looks like muscle twitches brings a lot of people here, but they are not a great indicator of the disease.

The hardest part of course is the uncertainty, which seems to be a hallmark of this disease - difficult to diagnose and impossible to say precisely how it will progress…

If nothing else though, I’m now far more aware of it - having known practically nothing before a few weeks ago. It’s also prompted me to donate to some charities, because if there was ever a disease that needed a proper treatment for those afflicted by it then it is this one.