My ALS fears

[atl]

Hi everyone. I've really been having a tough time with fears about having ALS, it's something I think about pretty much every minute of every day. Or close to it.

Several weeks ago I started having this fatigue feeling on my right side, right leg and right wrist/hand. It's not always there, but it's there a lot. My right hand just feels tired and little slower. My right leg feels fatigued. I won't say it's weakness because so far I can pass all the clinical weakness tests, and my doctor did them a couple weeks ago and I came out fine. She wasn't worried enough to send me to a neurologist, apparently.

However, when I wake up in the morning, my right hand is definitely weaker than the left. I can't grip things as strongly on my right side. This wears off after about an hour or so. I also have some dull pain in my right wrist and top of my right hand. My typing on my right hand seems a little slower than on my left. I can still do everything like button my clothes and open doors, etc.

I also have lots of muscle twitches in my lower legs, below the knees, and in my feet. I have more twitches on my right side than my left, but I get them in both. In particular my right toe that is second in from the pinky toe has been twitching off and on for weeks now. My left eyelid has been twitching a lot now too.

I am constantly looking for atrophy in my limbs. I did notice that my right pectoral muscle is smaller than my left. Not radically so, but it is noticeable.

I should mentioned that I got really sick with a viral infection a couple months ago. It took me weeks to recover from that. My doctor things this might be some sort of "post viral syndrome."

Anyway, it helps reading some posts here about others who have gone through something similar. I get sucked down the rabbit hole of Google searches at night. Any advice is appreciated.

Thank you,
ATL

[nivekc251]

ALS weakness doesn't flare up in the morning and improve in the afternoon. Your motor neurons die and therefore destroys the connection with the muscle and brain. All the twitching sounds like BFS. I hear a lot of stories about someone having a virus or cold, and developing it. I've been twitching for 19 months my fourth toe twitches all the time and so do my calves. Eye lids twitch everyday. You are fine twitching isn't ALS. Clinical weakness is not being able to do everyday tasks like brushing your teeth, wiping your ass, locking your door , using a t.v. remote etc.. Stop examining your body for atrophy because you are human and you will find an imperfection and it's going to freak you out. Find a new hobby to help you ignore the twitching and stop over analyzing this because it's a horrible fear that can mentally cripple you.

[Bigboyuk]

Hi one good bit of advice is don't dr google it's not helpful and will only fill you with fear and anxiety Also sound advice from nivekc251 nothing more too add on that Cheers

[Fishmanpa]

Please read this...

Positive thoughts

[atl]

Thank you all for you replies, I really appreciate them. And while I can see that what I'm experiencing is really not consistent with ALS, the testing and comparing and ruminating is tough to keep at bay. And then you have the moment

You're right, gotta keep busy. We have a 6 month old now which means that we spend a lot more time at home and less time out doing things which isn't great for not ruminating.

Yeah the viral infection I had earlier in the summer really knocked me out. For weeks and weeks afterward I was just tired and had malaise. It took me a long time to get back to feeling normal again, and now this.

I've been through this stuff before, with various forms of obsessive fear including cancer, STDs, and the one that really threw me for a loop and lasted for years, fears of being gay. So I definitely understand that Dr. Google is not my friend here and I'm really going to commit to staying away from that.

Thank you again, very much appreciated.

ATL

[tryingtosurvive1]

take it easy. Post viral syndrome seems to respond well and resolve with rest (ok, according to the internet.)
A lot of people on the old BFS forum would develop twitches after a virus.
ALS is like "I couldn't open the door and for awhile I thought the doorknob was broken"--people feel normal but can't do stuff. You can read the sticky from the ALS forum that Fishmanpa has reposted, of course.

[dmc1892]

Please read this...

Positive thoughts

definitely worth a read. very clear message

[gillebro]

I hear you. I go through an ALS panic roughly once a year. Here in the UK they have awareness campaigns during June, and that increased exposure triggers panic in me, which lasts for days, weeks, or months, depending on how well I handle it.

But hey, you're hardly alone. I've read so many posts on here about ALS fear. It's one of those illnesses that really messes with us HA sufferers.

[Becazican]

Please read this...

Positive thoughts

listen to fishmanpa

[atl]

Thank you everyone for your replies. I was doing pretty well until tonight.

I noticed there there is a muscle in my right foot (the side that has felt weak/tired/awkward, along with my hand) that is significantly smaller than the corresponding one in my left foot. It's called the extensor digitorum brevis muscle.

But the thing is, I can flex it. If it was atrophying from ALS, which means that it wasn't getting a signal from my brain, I wouldn't be able to flex, it right? It has me pretty worried that it's noticeably smaller than on the left side.

I also feel like my right hand is slow/awkward/clumsy.

So far I haven't had any "clinical" weakness, as in everything still works. And my doc did strength tests on me as well and said everything came out fine.

However, does anyone have weakness in the morning? My right hand's grip strength is definitely weaker than my left in the morning. Then after about an hour, it isn't weak anymore. Pretty strange.

Thank you for any insight.

ATL