Symptoms for weeks

[garyh341]

Hi everyone,

I know your time is valuable so I will make this as succinct as I possibly can.

A little over a month ago I started waking up with headaches and began waking up at least two times each night. I've also noticed myself become short of breath a lot quicker than normal. Then, over the past month, my ability to lift weights at the gym has gone steadily downhill, despite sticking to my normal regimen.

Now, a little over a week ago one of my friends pointed out to me that one side of my lips wasn't really moving the same as the other one anymore, and that I was slurring words. And more of my friends began to notice this as well, and indeed when I look in the mirror and smile or talk I notice the left side of my face sort of trails the right side a bit. I can't really pronounce 's' like I used to be able to.

And now, just a few days ago, my left leg and my knee joint have both been quite sore. By the end of the day my leg is hurting with a growing-pain type ache, and my knee hurts a lot when walking up stairs. My neck, also, is a lot stiffer than normal, and my neck gets sore with strain a lot quicker, also.

I've gotten an MRI and blood work which have all come back clean, and have an appointment with a Neurologist scheduled for early January. I have an FVC of 88% and an FEC1 of 84%, and am waiting on results for an MG blood test. I've been (foolishly) looking around online and realize that my symptoms sound a lot like respiratory onset ALS. However, I'm 19 years old and have no familial history of ALS, so I'm wondering just how likely this could be? Does this sound like ALS? I have no atrophy yet, but have noticed some fasciculations throughout both my legs and down my back.

Thank you for your time and best of luck,

 

[Atsugi]

Gary, ALS should not be on your list of possibilities. Your symptoms do not sound like ALS at all. Your age would make you a world record: you're way too young. I don't know what the problem is--or even if it is a neurological problem at all. But I do know you haven't described ALS at all. So don't worry about it.

 

[lgelb]

Gary, I think you mean "bulbar-onset ALS," but no, this doesn't sound like it at all. This seems more like an inflammatory process or pressure palsy of some kind. If you sleep on your left side at all, I would stop. I'm also curious if you were tested for Lyme or if you have traveled outside the US recently?

You're doing the right thing by seeing the neuro, but I think you'll have something much more treatable than ALS. Try to enjoy the holidays, and with your symptoms, I would make extra sure to balance any adult beverages with more hydrating ones. It's also a good time to visit a nursing home or rehab facility and spread the cheer of the season.

Best,
Laurie

 

[garyh341]

Thanks for the reassurance!

I know how rare ALS is at my age, and especially for it to start with my lungs, but it's been tough waiting for my appointment given how there doesn't seem to be anything that matches my symptoms as well as ALS. On top of that, I've been noting myself perseverating a lot more, and have been having widespread fasciculations in both my legs. My left knee also grinds when standing up, or when working against any sort of resistance.

Those are all of the symptoms I've been having though. Even with that, would you say ALS is unlikely? And what of this stuff do you think is relevant to tell my neurologist?

Thanks!

 

[garyh341]

I guess what I'm saying is, I'm fearing I have FTD a little as well, too, given my perseverating and sudden apathy, along with a bit of disinhibition.

 

[Nikki J]

This is this poster's 4th persona on this board

 

[affected]

Your symptoms don't really match ALS but could match a huge range of other illnesses.
I know that if you use the internet you will come up with ALS but that doesn't make it true.

The slurring speech is something I would highlight. It doesn't mean ALS either necessarily but you asked what would be most relevant.

Write your issues down to take with you.

In the meantime you should hold yourself back from internet diagnosing as you need actual doctors to do this.

All the best

 

[Nikki J]

This thread is closed. This poster is banned