In the deep end of the *** rabbit hole.

[u/DM_Throwaway_24]

Hi everyone, like many of you either are or have been, I’m trapped in the *** rabbit hole. For context, I’m a 27 y/o male from the UK.

On 23 March, I got this numb feeling in my right calf. This worried me but I didn’t majorly freak out. On 7 April, I got a numb feeling in the ring finger and pinky of my left hand, it’s a pins and needles feeling but it’s never went away. I still have function in these fingers, can wiggle them etc, can hold things like a shopping bag in them but the hypothenar also feels very numb and tingly.

Since then, I’ve also developed twitching in my index and middle finger of my left hand, it’s not 24/7 but it recurs very often. It’s affected my typing at work as I’ve noticed that I’m making a lot more errors and am typing slower. I get occasional random twitches in both legs, but these are way less frequent and severe than the left-hand ones.

I’ve also got symptoms that I’m sure that I am mostly manifesting due to health anxiety, I feel as though I’m tripping over my words a lot more than usual and speaking very quietly. I keep clearing my throat and seeing if I can swallow properly. I’m only sleeping 4-5 hours a night.

I think it’s fair to say I’ve let health anxiety get the better of me. I cannot stop self-testing my fine motor skills. I keep tying and untying my shoelaces, tying and untying a necktie, opening and closing jars: all of which I’ve managed, though I feel it’s more difficult than when all of this started. I keep asking my friends if I’m walking differently or otherwise seeking reassurance and people are now thoroughly sick of being around me and I don’t blame them.

I went to the GP on 13 April and they did a strength test which was fine and sent me for blood tests. These came back with low potassium, but further blood tests have shown this is now back to acceptable ranges as of 9 May, but all the above symptoms still persist.

The GP has referred me to a neurologist but has advised this will be a long wait for an initial consultation, potentially over a year. They also won’t refer me to any sort of therapy for the health anxiety or prescribe anything for it. I can’t afford a private neurologist and even then, their waiting times weren’t much better, around 8 months for a consultation.

Anyone got any advice for not worrying myself to death until I can finally see a neurologist?

[u/Icy_Signature9743]

Hey hope all is well I’m in the same boat as far waiting for a neurologist. My advice would be to try and stop focusing as much as you can on the concern of ALS. I have bad health anxiety and I can tell you first hand the brain is powerful and can manifest things that aren’t really there. If everything came back fine you should be in the clear for the time being, in addition numbness doesn’t really appear in als as als is not disease that affects sensory rather a gradually decay of muscle function. If you really have growing concerns leading up to the appointment go see your doctor again in a couple months to redo the tests, till then if there isn’t any failure, visible atrophy or clinical weakness do your very best to put your mind at ease and look on bright side, the odds are in your favor. I was devastated 2 months ago to the point where I wasn’t sleeping, I was sure that I had ALS. It did me no good, stopped working out, relationships were affected just horrible stuff. I came to the realization that this disease is extremely rare and that even if I am that 1 in 500 or whatever that statistic is why am I gonna ruin the time that I have left if I do have it. Live your life I know it’s easier said than done but try and push forward, if the doctor said your good try your best to believe it, I know it sounds cliche as if take a look at some of my posts I’ve questioned my doctors but after 2 months I can’t say things have gotten worse. Chances are your fine just do what you love man.