Worried it might be ALS

[Worrywort83]

Hello everyone,

My name is John, I'm 39 years old and I'm Asian American. Lately I've been having muscle twitches and its really starting to worry me. It started off on my upper back muscle right behind my rear shoulder muscle. The fasciculations lasted for about 3 days and when that stopped I started getting these pulses through out my body. They weren't fasciculations but felt like pulses through out my body that never lasted more then a few seconds in that particular region. Happens more at night while I'm trying to go to bed or just waking up. I've had muscle pain and soreness in my right arm that comes and goes, and changes spots in my right arm. From my bicep, to my forearm and then to my elbow. About a week later I started to develop a fasciculation in my left knee and hasn't stopped since.
2nd symptom - for the past week I've been woken up after about 4-5 hours of sleep with a burning sensation in my stomach and a soreness. Once I'm up, the pain goes away. I don't feel it much during the day. I usually rarely yawn, and I'm noticing I yawn more often, they aren't back to back but yawn more then I use to. It also feels like sometimes ive been stumbling over my words and my saliva feels thicker and more often have to swallow or my speech gets impaired.
I know it is still very early with all my symptoms, but it has me a little worried and concerned. It has definitely given me health anxiety and i'm not sure if that's what is making everything worse.
Was wondering if I could get someone's opinion that has also had these symptoms and everything turned out ok. How long did they last you?
My heart goes out to anyone who is dealing with ALS and everyone who is in the same boat as me.

 

[ShiftKicker]

Hi John-

Here's a pretty comprehensive resource for you to have a look through first. Read Before Posting

It sounds like you looked up twitching and the internet served you the most exciting results possible. In the link above you will read that ALS has a constellation of symptoms- and you don't report anything that would give a doctor concern this is the issue. It's not clear what may be the problem, but twitching is like coughing- too many reasons to list, but the vast majority are of no or little serious concern.

If you are worried, an exam by a doctor would go much further to reassure you and provide proper information about what might be the issue. Heading straight to a forum for a terminal disease is quite a leap and has likely increased your anxiety unnecessarily.

Take care

 

[affected]

I don't see you mention seeing a doctor? This is the first thing you should do as whatever is going on, early treatment is a good idea. I'm sure that will provide you with a lot of comfort to be checked over and find out that this is something quite common and able to be dealt with.

 

[Worrywort83]

I read a lot of forums and watced a lot of videos about people’s early symptoms. A lot of them said the tests the neurologist did didn’t come back positive with anything. I’m having a lot of little symptoms. I had some twitching, I’m also getting a low key cramp on the bottom of my right foot. Tingling in various parts of my legs. Have a slight sore throat that comes and goes, not making it difficult to swallow but just a little sore. Haven’t gotten any weakness yet and I told myself I wouldn’t get tested until that happens. Just a little worried and I’m having some health anxiety.

 

[lgelb]

I'm sure you know that a sore throat has nothing to do with ALS onset but can mean hundreds of things or nothing.

There's nothing on line that says it's a good idea to take a bunch of symptoms, decide they're most like ALS, post on an ALS forum, but delay seeking help until you really think it's ALS. I'd see a PCP to maybe do some lab work to rule out a systemic illness.

Since you acknowledge health anxiety, visiting a counselor might help you put all this in perspective.

Best,
Laurie

 

[affected]

Honestly, posting here means you ask a question and we reply. If we ask questions back to clarify, you should answer them.

Coming back and ignoring my earlier reply to you and just posting you next set of fears is not productive. It also makes it seem like we waste our time replying because you are only here to let off steam.
Please see a doctor and stay off here so you can return to full health.

 

[Worrywort83]

I wasn’t trying to ignore you & apologize if you felt that way. I was trying to stay off this forum but I find myself scared and coming back to this forum for relief. I really appreciate you speaking with me and helping me. I have tried to schedule an appt with my pcp but it’s not for another month. I tried seeing a neurologist as well and they said I need a referral from my pcp. So I’m just playing the waiting game and it’s very stressful.
my twitching has slowed down but my sore throat started causing difficulty swallowing. I’ve been choking on water, maybe once a day and the pain from swallowing isn’t constant. It’s very strange and never experienced a sore throat like this. It takes me 2 swallows to swallow some spit because it feels like it gets stuck. I understand that you’re not a Dr and can’t diagnose me and me taking these symptoms and thinking it could be als is adding on to my anxiety. it’s just helpful sometimes for my mental well being to talk to someone about this because I don’t want to talk to family and friends, so I don’t worry them as well for something that might not even be als.

 

[Bestfriends14]

If you need someone to talk to, there are professionals for that. You don't want to bother your family with this, yet you will do so to terminally ill folks and their exhausted caregivers? Hmmm, interesting.

For your sore throat, lozenges will help, as well as hot tea with lemon and honey.

Good luck to you

 

[affected]

My husband was bulbar onset - never had a sore throat. It is not a presenting ALS symptom.
Thank you for answering. This is not an anxiety release place for you. It is a forum for the terminally ill and we have a section to answer genuine questions - and as the sticky makes clear, once answered you are asked politely to move on.
There are lots of forums for people who have health concerns and no diagnosis where you can let your anxiety about what is happening out. That may be a better place for you now while waiting as we are not seeing ALS.
Do come back next year and update with a diagnosis as it can help other anxious people to see outcomes.
I wish you the very best and a swift return to health.

 

[Clearwater AL]

Worrywart, "I have tried to schedule an appt with my pcp but it’s not for another month."

It is just a few days before Christmas, they have a Holiday Schedule too, including New Years.
They need a break too. Next month is only a few weeks away. If you feel your issues are
urgent enough you could most likely find an Emerge Clinic open in your neighborhood.
Jumping to ALS from consulting Dr. Google, here and the Internet will only pour more fuel
on your Health Anxiety. It will only be a vicious cycle for you. Until you finally see a PC
that's no sense posting anymore of your symptoms here.

Finally, "it’s just helpful sometimes for my mental well being to talk to someone about this
because I don’t want to talk to family and friends."

Why? Are you afraid they may be truthful to you? Tell you the same you've pretty much
heard here. They know you far better than we do...

I hope you do find some help with your apparently considerable case of Health Anxiety
at this joyful weeks of the year.