Scary symptoms, absolutely terrified

[Tessamama]

Hi everyone, I’m Kaylee (F,25)
Back in the beginning of April 2024, after a bad bout with campylobacter (gastro bacteria) i noticed my legs began to ache at night (like they felt heavy when i would lay down at night and i would constantly have to move them) and then my legs began twitching, fasciculation-like twitching, (I know that twitching without weakness isn’t cause for concern but there are stories) and that twitching quickly spread to other places, I have it almost everywhere, I feel them though I can never catch them like when I feel one and I go to look at it, it goes away, I caught one on my wrist only one time and I might have them on my tongue but I’m not sure cause only when I stick my tongue out do I see twitching, there’s no twitching when it’s resting in my mouth, I read that it’s normal for your tongue to twitch when you stick it out? Can someone explain how the tongue exam works please?

A few weeks later, my joints started popping constantly, occasional pains, and I got some tingling, along with some blurred vision and tinnitus that comes and goes, and after hesitating to make a neurology appointment for weeks out of pure fear of an ALS diagnosis being possible, I finally made the appointment for October.

Fast forward to this past week, I was hospitalized with viral meningitis, so while I was hospitalized and being treated for that, i figured I would tell the doctor about the symptoms I had been having for months and she got me in for an MRI at the hospital that day, and everything looks good, the doctors said it could be a syndrome from campylobacter months ago and the symptoms will subside if that’s what it is but told me I should still keep my neurology appointment for October, but that terrifies me cause doesn’t the MRI rule out multiple sclerosis? Couldn’t I still possibly have ALS? Since ALS isn’t diagnosed by MRI

Im terrified, I know it’s not common for 25 year old women to get it, but I’ve been crying a lot almost everyday since I discovered what ALS was and convinced myself that I have it and worrying about the future of my 16 month old daughter, thinking I won’t be able to see her grow up and graduate and get married and have babies and it’s absolutely tearing me apart, October can’t get here fast enough. Please help me.

I just want to say, God bless anyone diagnosed and fighting with this devastating disease, yall are true warriors.

 

[Nikki J]

It doesn’t sound like ALS and does sound like your poor body is still recovering from the infections.

Of course they said keep your neurology appointment. It isn’t that they really think you have a neurological disease it is defensive medicine that if anything ever happens they can say I told the person to follow up.

The tongue exam my neurologist does She looks at my tongue at rest and then asks me to stick it out and move it side to side. There isn’t anything esoteric about it Other neurologists will have different ways of doing the second part but checking for twitches is just looking at the tongue at rest. Even then it will occasionally move but they can tell if it is worrisome. Still a twitching tongue is not diagnostic

You really need to stop googling and start taking care of yourself. You have been really sick so be good to yourself with eating well and getting good sleep ( as much as you can with a little one). Healthy activity too. Good luck

 

[Tessamama]

Thank you very much Nikki