I'm pretty sure that I have ALS

Atka (Dan)

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Hi all. Well, this isn't easy but you all already know that. I'm Daniel but often go by Dan. About a week ago, I've been experiencing lots of muscle twitching and muscle weakness throughout my body and it's getting worse. I know symptoms probably shouldn't come on this quickly but I've been abnormally tired and felt tired for months, so my muscles might have been getting weaker without me really noticing. I can still swallow but I'm starting to have breathing issues and pain in my chest (lungs not heart). I've gone to the ER and all the tests for blood and urine came up clean. Sadly, I can't get into a doctor because of the stupid virus. I'm not making light of the virus just that it sucks that's impacting everyone else with health issues. I just don't know what to do. I have a doctor calling me on Monday but I'm afraid it just going get worse. I really like to get tests done like EMG asap. It just sucks.
 

KarenNWendyn

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Hi Dan, please read this if you have not already done so:


You don’t have ALS. ALS doesn’t “feel weak”, nor does it come on so rapidly. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described.
If you’re suddenly having breathing issues, you may even have that “stupid virus”.

If you have a primary care doctor, he or she would be a good starting point to get checked out. Until then, I suggest monitoring yourself for fevers and getting checked out if you have fevers and/ or worsening respiratory symptoms. Make sure you keep hydrated.

But the good news is that you don’t need to be on an ALS forum with the symptoms you have.
 

Atka (Dan)

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I'm sorry that I didn't do a good job explaining my current condition. When I went to the ER, they tested me for the virus and I didn't have it despite the breathing problems that I was and am having. I feel more than just weak, I am experiencing muscle failure. I can't grip on to things like I use too and even using a computer mouse is much more difficult to use. I'm becoming much more stiff and rigid mostly in my limbs. I can't walk without the fear of losing my balance since my legs are so stiff.

The twitching over my whole body but mostly in my limbs is getting worse and can last for 10s of seconds at one spot. I'm also suffering from muscle cramps that is mostly confined to my right leg for the moment. While the muscle twitching over my whole body and trouble breathing started about a week ago, I did have some twitching in my limbs for months but I ignored it. I think I have lost some muscle mass as well.

I'm trying to see my doctor but their offices had to close since someone had the virus there and they won't be back open 'til April. I will be getting a call from a doctor on Monday like I said in my first post. I know that I'm quite paranoid about things but my condition is getting worse.
 

affected

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Twitching really means nothing. Karen who answered you is a doctor, so she knows ALS from both sides.
The doctors can't do anything if they 'catch it early' or anything if it were ALS. They can't prevent 'your condition from getting worse' either.

So your best course now is to stay hydrated, eat well, exercise, do anything that lessens stress, and see a doctor when it is possible.

If you are experiencing true clinical weakness, it will be detected when a doctor can see you.

Without a pandemic around we often had to wait months to see a specialist when we were looking for a diagnosis. Just make the most of today as you will never get it back again regardless of what is going on. I highly doubt it is worth your time hanging around here.
 

Atka (Dan)

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Thank you for both of your thoughts and advice. I'm doing my best to keep myself healthy, it's just scary that my symptoms are getting worse. I know what you mean but I would like to stick around to provide any updates of my condition.
 

affected

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Certainly let us know the diagnosis when you receive it, but that's all we can do from here really :)
 

lgelb

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This is not the place for your updates, because we do ALS. Your usual doc should be able to reassure you/refer you to somewhere that does telemedicine if needed. If you get worse or need help there in GA, you will want to have an ongoing record with someone. It is hard to believe that the ER would have let you go with no followup plan if your muscles were in the kind of shape you describe, so that's where a baseline and monitoring is important, and that's exactly what no one here can do.

You might want to start a symptom, sleep, liquid intake and food record for yourself, along with recording the exercise/stretching/walking that you can do even with social distancing. It is quite likely, since you report fatigue of several months' standing (which, again, has nothing to do with ALS) that you have all the keys you need to make it better yourself, even if not perfect.

Don't forget to check your pillow, mattress, work chair, sofa, furnace filters and propensity for allergy/stuffed nose symptoms at night. You can record your breathing on your phone.

Best,
Laurie
 

Atka (Dan)

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Thank you Laurie. I will do a better job of tracking the various symptoms that I have when I speak to my doctor then take the best course of action. Well, the ER did setup the telephone appointment and they were mostly focusing if I had the virus or not. I will only provide an update if it's warranted. I should also say that I'm 38 and my birthday is later this month. Hopefully, this is something else like you said. I gladly take that as my birthday gift. :)
 
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