Could this is ALS?

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mauvemoon13

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Hi everyone, I would like to keep this post as respectful and honest as possible so I will start out with a few disclaimers.

1: I have been diagnosed with Cerebral Palsy since birth, a chronic neurological disability that has no cure. CP is non-progressive and can affect every individual differently. It can cause spasticity, tightness, weakness, pain, and muscle spams among other things. My symptoms have always been manageable and only noticeable after heavy physical activity.

2: I do have GAD and I’m currently seeking various types of treatment. It has drastically improved over the past two months. It became severe after a panic attack two months ago that left physical symptoms for over a week before I could level out.

Now onto my symptoms I’ve been concerned about. For a little over a week, I’ve experienced muscle twitching all over the body but most noticeably in my upper arms, thighs, and calves. I also have muscle spams in my arms and hands. These symptoms seem to increase when I’m at rest and trying to sleep at night. These symptoms have not been common in the past with my disability.

I’ve also experienced pins and needles, tingling in backs of thighs, joints popping, and muscle pain that seems to radiate or is sometimes not present at all, a tremor will also show up in my hands occasionally but lasts no more than a few minutes.

My main concern came today when I was typing and my left hand felt like it was moving slower than my right. My left arm/ leg feels heavier as well but my range of motion seems to still be normal. I am 23 years old.

I have not yet seen my PCP for these symptoms bc I am afraid I will be brushed off. Everyone I’ve expressed concern two has rolled their eyes and waved me off. As someone with already limited mobility, any change is extremely noticeable to me and concerning. I try to keep telling myself that it’s highly unlikely I have two neurological conditions but at the same time these symptoms are new. Any opinions are greatly appreciated.
 
Hi, Moon, since you are already dealing with CP and GAD, I am sure new muscular issues are frightening, but I don't see any relationship with ALS. It doesn't present with the sporadic, diffuse, migrating issues that you describe.

Rx for GAD and CP symptoms can disrupt sleep (both quality and quantity), affecting your positioning, pins/needles/pops and all that. If your GAD is improving, which I'm glad to hear, some part of your regimen might need adjusting.

Tremors are common with a lack of refreshing sleep. It can be worth tracking your sleep architecture (time in various stages, etc.; ignore percentages) with a wearable, especially if you are taking sedating meds prn.

Spasms at rest, trying to sleep, suggests a sleep study might be fruitful; the screening study can be done at home.

You might look into bodywork that elongates the muscles (tai chi, ballet, Pilates...) or do more if it's already in your routine.

I would discuss this whole sleep/anxiety/rx thing with your PCP, counselor, or neuro and get some thoughts. You don't have to approach it from a standpoint of "these are my new symptoms." It can be a more holistic check-in, with your improvements and concerns of equal importance. And honestly, if your team is not supportive, maybe time to rethink its members. Even a telehealth visit with a total stranger might present you with some useful insights in this moment.

Best,
Laurie
 
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