Was scared of ALS now MS

[4bready]

Thanks for responding guys. I'm trying but I'm having this pressure/tight feeling in left cheek/jaw that has shifted to right side. It comes and goes through the day. It has me freaked out with MS. I googled that MS can cause face pain. I will get burning sensation at knee joint for like 2-3 minutes one time a day over last three days. Thanks for listening...I'm in that rabbit hole and can't get out.

[Ben1989]

Hi 4bready,

I feel for you being in this rabbit hole – it’s a horrible one. However, I will start with saying you don’t have ALS. Actually ALS sufferers wish that ‘twitching muscles’ could be struck off the ‘symptom’ list as it is just not a symptom.

Firstly, ZERO ALS sufferers have ever heard of multiple areas of the body being struck at once. That is not how it works. It doesn’t just ‘shift’ to one part of the body. With ALS you would feel no tightness, you would feel no pressure, and you would actually feel zero weakness. Key wordbeing ‘feel’. ALS does not affect the sensory area of your body, it is the motor neurons so you would just not be able to do things.

I was down deep in the ALS/MS rabbit hole for a long period of time, others will probably vouch for that. I felt so much weakness in my right arm. It felt so strange. But it FELT strange. That is not ALS but I couldn’t convince myself so I had an EMG test and a couple of NCS’s on my arm. What cameback? Nothing. It eventually went away. It actually comes and goes but it doesn’t bother me and it goes and I don’t even notice the feeling has gone.

Then I panicked about bulbar onset as I had a twitch in my tongue. I convinced myself I wasn’t talking properly. Totally concentrating on all my speech in conversations. I wasn’t even listening to people I was solely focused on my talking. Bulbar onset is a very rare form of ALS on top of ALS already being super rare. Yep, I stopped noticing and nothing has happened.

MS was another one. I even had a MRI scan of my brain. Yep, nothing came back. Because you’re focusing on it you notice everything about it and you literally convince yourself you have it. You don’t. I also googled the face one and convinced my brain into thinking my cheek was burning. The brain is very powerful.

I get twitches all the time. They don’t bother me anymore and they disappear. I am 99% over my ALS/MS fears and I had a twitch in my cheek and chin for over a month. Every single day, every 30 minutes for over a month! I think I could justify being scared of ALS or bulbar onset but I wasn’t and it just went away.

You’re fine mate. You sound exactly like every other HA worried with ALS & MS who turn out fine. P.S. DO NOT GOOGLE

[SQ]

Hello, I just joined today because of things I am experiencing now that I never have before in my life. I had a full time job and ran an HVAC business after hours for several years now up until the end of last year, I was tired all the time, but when I moved and quit my job I slept for days, and days. I figured I was wore out, and that was the reason for it, but I couldn't seem to get moving, and felt like I could not hit "the go button" (meaning I didn't seem to have any motivation to do anything). I have been tired in my life, but nothing like this. So I started looking at the same things that Murphy93 did, I mean we are seemingly like twins in this area (even the same age). I mean, its a serious issue that I haven't ever had before? but I felt like I had Bulbar ALS, then Limb onset and I do feel week and exhausted all the time. I have been having breakdowns and crying spells (when away from others) and it is a serious time in my life, and I appreciate murphy sharing the concerns he is having. It mirrors my own. I was/am concerned also. I have read almost everything on clinical weakness, and actual weakness (they call it atrophy or muscle wasting). Regardless, Im finding myself doing calf raises, push ups and strange things to see if one side is worse (even measuring to see which side is smaller than the other). It is an extremely scary path to travel, I have 4 kids. I do not know what is wrong, but it just doesn't feel right? One thing I have found that has helped me, I would like to share with Murphy is I found a forum on an ALS site entitled "why you don't have ALS" and I found a sticky and it is very long, but it was very insightful. It started out by saying "ALS is about failing not feeling". I am not here to say it solved my fears, I am struggling also because I just feel like something is zapping my energy? Like going down the road with the E-Brake pulled (holding me back kind of feeling). I want you to know Murphy, you are not alone, I am the same age and the concerns are real here also. I won't go into the list of symptoms i have been feeling, except to say I have another doctors appointment this week. I am glad I found this site, because i feel like maybe I can vent, trying to hide my concerns from others is even more exhausting. It is a lonely struggle, but I do feel your same concerns ring true with how I feel.

I did read the new member stuff so I hope I am not overstepping any boundaries? Again, I have never experienced anything like this.

[Fishmanpa]

"why you don't have ALS" and I found a sticky

You mean this sticky?

I copied that over to try and help those in the ALS rabbit hole.

Positive thoughts

[SQ]

Thank you Fishmanpa, I could not remember the exact details. That is what I was referring to. Also I had it wrong I said Murphy but it was 4bready I was mentioning we were having the same struggles. Sorry about that.

SQ

[Murphy93]

Hi SQ sorry I haven’t replied I was trying to take a break and get this under control . I totally relate to how your feel it is life ruining and I hope you Get out of this rabbit hole soon . I am doing slightly better I have been on anti anxiety meds and trying to remain positive . I am still twitching all the time , have muscle pain and horrible tingling in my arms upper back and feet but I am just trying to keep going and realise that after 4 months of worry nothing has changed and I have not deteriorated ! Well I hope it’s a good thing lol ! Saturday night and I am still at home worrying but I’m hoping I can get over this soon I have holidays coming up soon And I don’t want to look back with regret . I hope you Are all keeping well ! Oh and totally agree Fishmanpas post on Als literally is a life saver when I’m at my lowest which is often these days . I really want to enjoy the last year of my 20s not ruin it with a fear of Motor neurone x

[4bready]

Hello, I just joined today because of things I am experiencing now that I never have before in my life. I had a full time job and ran an HVAC business after hours for several years now up until the end of last year, I was tired all the time, but when I moved and quit my job I slept for days, and days. I figured I was wore out, and that was the reason for it, but I couldn't seem to get moving, and felt like I could not hit "the go button" (meaning I didn't seem to have any motivation to do anything). I have been tired in my life, but nothing like this. So I started looking at the same things that Murphy93 did, I mean we are seemingly like twins in this area (even the same age). I mean, its a serious issue that I haven't ever had before? but I felt like I had Bulbar ALS, then Limb onset and I do feel week and exhausted all the time. I have been having breakdowns and crying spells (when away from others) and it is a serious time in my life, and I appreciate murphy sharing the concerns he is having. It mirrors my own. I was/am concerned also. I have read almost everything on clinical weakness, and actual weakness (they call it atrophy or muscle wasting). Regardless, Im finding myself doing calf raises, push ups and strange things to see if one side is worse (even measuring to see which side is smaller than the other). It is an extremely scary path to travel, I have 4 kids. I do not know what is wrong, but it just doesn't feel right? One thing I have found that has helped me, I would like to share with Murphy is I found a forum on an ALS site entitled "why you don't have ALS" and I found a sticky and it is very long, but it was very insightful. It started out by saying "ALS is about failing not feeling". I am not here to say it solved my fears, I am struggling also because I just feel like something is zapping my energy? Like going down the road with the E-Brake pulled (holding me back kind of feeling). I want you to know Murphy, you are not alone, I am the same age and the concerns are real here also. I won't go into the list of symptoms i have been feeling, except to say I have another doctors appointment this week. I am glad I found this site, because i feel like maybe I can vent, trying to hide my concerns from others is even more exhausting. It is a lonely struggle, but I do feel your same concerns ring true with how I feel.

I did read the new member stuff so I hope I am not overstepping any boundaries? Again, I have never experienced anything like this.

Hey, I hear you man. I am up and down. One day feeling good next feeling something in a new area :(
Last night I had some "visual snow" which I believe is anxiety...but I'm trying my best not to google...
This rabbit hole stinks...I hope I get out soon :(

[SQ]

SQ here, thank you guys for not being afraid to reach out and for expressing concerns about medical issues or our own issues with anxiety. I know it’s not always considered “manly” to share feelings about these things. I to have been working trying to get through some of these things and clear my head. Staying busy has been helpful for me.

I really hate it when I’m exhausted and need to sleep, but my body won’t let me, it seems like these are the moments when I reflect on things I spent the day pushing away.

Thank you guys, I have been to the doctor and I am working through trying medication along with openly discussing these things with my family. I received the strength by reading what others have posted, that helped me reach out, I feel there can be healing/peace in numbers.

This is the first time I have ever posted on any forum, and I want to express my gratitude for those who shared their feelings and encouragement. Thank you

I am still trying to figure out how to do the “introduce yourself” part? I don’t seem to be able to get that to work? Anyway, thank you friends.

SQ

[4bready]

I rally think I'm losing my mind... I’ve had back issues before. Today I hurt left low back in gym and about an hour later my left quad was feeling tingly and slightly numb. That feeling when you sleep on arm funny and it’s “asleep” when you wake up. That’s what I feel in left quad. I’m freaking out just thinking it’s onset of ALS or MS. I thought I read numbness and tingling is sign of these. I can fire muscles no problem
thanks friends I know this sounds nuts

[Fishmanpa]

So you hurt your back in the gym and now you have some tingling in your leg. How do you jump from what is most likely a disc issue to ALS? Ohhh right...

Perhaps reading THIS will help.

Positive thoughts