Concerning Symptoms

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AssistMePlease

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Learn about ALS
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Hi Everyone,

Thank you very much for taking the time to read this post and to answer my questions. I am looking to benefit from your expertise and hopefully ease my mind, as I've been having difficulties with rationally analyzing what is going on (I suspect too much Googling of symptoms and a history of anxiety, which I will fully acknowledge is likely making me hyper-vigilant of any perceived serious problem).

I am a (recently turned) 31 yo female, no kids, moderately active with a desk job (working from home these days, obviously). In October this year I began experiencing persistent muscle twitching in my legs. It began in my calves and thighs and was very pronounced when at rest. The twitching transitioned to painful tightness, particularly in my hamstrings. This started in one leg for a while then went to the other. I am still experiencing twitching in my legs and it is especially noticeable at night when I am trying to sleep. The best description would be like fast pops up and down the leg with the occasional thumper near my knee, and vibrating feeling in my feet.

Within the past month the twitching has begun to occur in other places across my body: arms (shoulders, biceps), back, abdomen, buttocks and my left eyelid. All but the eye are sporadic - the eye happens pretty consistently along with the legs.

In addition to the twitching, I have lately (within past 2-3 weeks) had instances where my right hand feel stiff. As I sit typing this I find that my ring finger feels 'stuck' and like it's having a hard time reaching the keys. I have also had several instances where my throat feels tight and like it closes up. This scares me a lot, especially when I am eating and I worry about choking. I have intermittently also felt as though I have a hard time breathing and swallowing when my throat feels like this.

A month ago I had a virtual visit with my PCP, who had me do some walking exercises (on my heels/toes, stand on one leg, etc) and I did ok. Their attitude was 'wait and see' since a couple months isn't really that long to tell if something serious is up according to them. BFS was also mentioned as a possibility, which I am exploring. I am switching insurances and will likely try to go in for an actual office visit with a new provider after the 1st of the year.

I would appreciate any insights you can offer as to whether my experience thus far sounds reminiscent of actual ALS. I am particularly wondering (looking for reassurance) as to the following:

- How likely is it really for a 31 yo female to be diagnosed with ALS?

- Does weakness or stiffness come and go or is it persistent, meaning once it appears it doesn't go away?

- Same with swallowing/throat issues - do these come and go?

- Do my symptoms and progression timeline reasonably sound like possible ALS?

Thanks very much,

Lee
 
The prevalence of ALS in your age group is <1 in 100,000.

Weakness does not come and go, though at the beginning, some days may be better than others. But there are no "100%" days.
Re swallowing, ditto.

As you say, an in-person visit with your primary care doc, can baseline your strength; s/he can suggest what should be ruled out; and make sure it is. If necessary, even another video visit might help.

Since it's dry here, I'd take a look at your furnace filter, humidification if needed, think about trying an antihistamine like fexofenadine if you're not taking one, and/or a nasal steroid and/or throat spray. You can also self-screen for GERD while awaiting your appointment.

Best,
Laurie
 
Thank you Laurie for the reply, I really appreciate your insight.

I had not considered GERD as a possibility since I don't really have that 'burning feeling' in my throat, but I am now wondering if this is a likely contributor as I've had chest tightness and shortness of breath over the past couple days. I've woken up several times in the middle of the night feeling like there's something heavy on my chest, and though I take deep breaths, I still don't feel like I'm getting enough air. Maybe this is trapped gas or digestion trouble as a result of anxiety.

Of course, my mind immediately began wondering if this was respiratory onset (widespread twitching + shortness of breath) but after going through some of the previous posts on this forum it doesn't seem like that's a likely case?
 
Hello again - I have a couple follow up questions about presenting symptoms. Specifically, is a persistently-tight throat or heavy-feeling head a common symptom for bulbar onset (in conjunction with body-wide twitching and stiff hands)? For the past week my throat has been feeling tight all the time and my neck feels weak like I have a hard time holding my head up. It's hard to find a good source of truth on the web to these concerns so if you can advise this does not sound like bulbar or respiratory onset I'll take it with reassurance.

Thank you very, very much for your time.
 
No, those are not characteristics of bulbar onset.

It is certainly worth testing the GERD notion with a food diary. The wrong food/drink, including alcohol, or too much within a few hours of bed time is often a culprit.
 
Thank you Laurie very much for your time and consideration
 
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