Any help would be so appreciated.

[whatisausername]

Hi, everyone, guess like many, I'm here because I'm scared of having ALS, which in itself makes me feel bad because I'm asking for help from those who have this horrible disease. I hope it's OK to post a timeline of events of why I think I may have it:

Around 10 months ago, I wake up and couldn't move. My arms and legs were completely dead and heavy, and moving them was extremely painful, and futile.

Similar sort of time, I start getting a slapping gait after crossing my legs.

The same muscle weakness comes along sporadically, but now at night times. Starts off as a ripping/tearing pain, and then becomes dead and heavy again.

Muscle weakness comes on more often recently (3 or 4 times a week). Last time it happened (a few days ago), I fall over twice trying to walk - first time I've fallen.

A couple of weeks ago, I develop postnasal drip.

Also, since beginning to read up on this, I've discovered I did in fact have other symptoms for a while: fasciculations, tingly legs and feet, as well as Ptosis.

Finally, I've very recently found out, that I've lost about 8kg in no more than 2 months. This is without changing any eating/exercise habits. I also think my left leg is slightly thinner than my right leg.

I'm off to A&E tomorrow morning after discovering the weight loss, and I know I won't sleep tonight. So, any advice/help/motivation you may have, I'm all ears. Thanks everyone.

 

[Nikki J]

This is not at all the way ALS happens. It is not episodic. Once motor neurons die they are gone Nor does your description of ripping pain sound like ALS nor tingling as it is a motor disease primarily.

I don’t know what is wrong with you. There is a rare disease called periodic paralysis. I also have a relative by marriage ( so not in my FALS bloodline who had episodic weakness that turned out to be autoimmune. I am sure there are lots of other possibilities but not als I don’t know what you expect A&E to do as this doesn’t seem acute as your timeline is 10 months. When you go to your gp tell them your symptoms and do not try to direct them. This isn’t going to be ALS so asking to have it ruled out will just make your diagnostic road longer

 

[whatisausername]

Hi, Nikki, thanks for replying, and I hope all is well? Got to be honest, the weight loss has completely and utterly sent me into a spiral. It took my mum to notice it (as mum's do lol).

I've sort of seen a few illnesses that make sense, and then the weight loss was noticed, and it's, yeah, not symptomatic of things I thought it could be.

I've got a GP appointment in around 3 weeks. I just thought someone from A&E could at least check my reflexes, and take some bloods, as I don't think I can wait the 3 weeks to try and figure out what's happening to me. Even now, my legs and feet are so tingly and cold, I wouldn't be able to sleep even if I wanted to.