Is this ALS?

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LizzyReed

New member
Joined
Nov 6, 2024
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4
Reason
Learn about ALS
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00/0000
Country
US
State
CA
City
San Jose
Hi everybody! My name is Lizzy I’m 27 years old. First wanted to say I can’t wait for the day they find a cure for this nasty disease. Want to hear your thoughts… I was diagnosed with Chronic Fatigue Syndrome in 2018. Mild fatigue, brain fog, headaches, floaters.

Saw a Lyme doctor 2020 and was diagnosed with Lyme disease coinfections and mold. Was treated but due to the expense of it was unable to finish. 2023 I developed Long COVID. Since then I have had 24/7 shortness of breath, moderate fatigue (worsened from former), headaches, post exertional malaise, brain fog, back pain. Have seen a pulm and they think I have Long COVID. Just over a week ago I developed whole body fasiculations every day so far about 10-20 times per day. They come and go quickly within 3-7 seconds. They’re everywhere but have noticed they show on the right bicep, stomach, legs. And just last evening noticed my right arm feels heavy. It feels like it has concrete it, not blood. I find it more difficult to do things when it’s like this.

Also I don’t workout by the way. I have widespread atrophy just due to being less active as I used to be an athlete and a avid gym goer. I was prior working a job that required physical exertion but when I got Long COVID I took up a desk job. I am increasingly concerned about my twitches and arm heaviness. And now wondering if my breathing has something to do with it. I will add as well my back pain which I briefly mentioned above is on my right side as well and I notice it mostly when I’m sitting for a long period of time like a few hours. Anyways, wanted to hear your thoughts. I am very concerned and this has completely taken over my thoughts. I plan to see a provider and eventual neuro on this but am pending an appointment with my new primary until next Friday. Thanks for your time xxx.
 
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I do not believe you have ALS. The "LLMD" world is full of quackery so I would not go back, nor do I think "not finishing" what was probably a heavy-duty regimen contributed to your problems.

Long Covid can cause problems with any area of the body and any organ. Labs can help illuminate whether it is the main problem. I am sure there is a long Covid clinic in the LA area, though the wait may be long. Meanwhile, I would work with a physiatrist (physical medicine/rehab) if possible, or even a physical therapist on things like the back pain. Talk to your primary about appropriate referrals once they have evaluated you.
 
Wow thank you for such a quick reply. Why do you not think ALS? Just curious. And it’s really good to hear your thoughts. I’m in the San Jose area and LA is quite far from me. I plan to see my new primary and will suggest neuromuscular referral. Also thank you for editing my blob of a post haha you made it much more legible. And I’m sorry for the loss of your husband.
 
Sorry, I forgot where San Jose is. The SF area has some long Covid clinics, including Stanford.

Re ALS, what you describe just doesn't fit any ALS onset pattern I know.
 
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So the twitches have become less severe. But they were only there for a week and it seems the last 2-3 days they’ve been much less. But I still have right arm heaviness. I’m concerned
 
I now have more twitching especially proximally. Widespread still. And my right arm heaviness isn’t any better. I have an appt to see neuro but not until March. Very concerned. Have you heard anything about proximal versus distal twitching along with widespread versus focal? I feel very alone and just need someone to talk to.
 
Lizzy, if you need support for your anxiety, this forum is the last place for it. You are terrified of ALS, despite being told you don't show signs of it. Remaining here is only likely to increase that anxiety. Please seek appropriate support for anxiety while you work with your doctors to track down any cause for your symptoms. It does sound like post viral issues might be possible, so why not focus on mitigating symptoms with that knowledge?

Please return to your doctor if you have further questions about your symptoms- an ALS forum is not a great place to get general health advice.

Take care
 
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