Waiting (impatiently) for my Neurologist appt

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Dec 5, 2023
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Hi, male 54.
Have read all the disclaimers before posting.
I started having 'weird' sensations primarily in my right leg calf knee and ankle area, pulsing, buzzing, and twitching a little over 2 months ago ~ mid September 2023. These sensations also would appear in my left leg but maybe 15% of the time compared to my right. A couple weeks later I started getting twitches elsewhere as well - buttocks, shoulder blades, etc.

Saw my PCP early October and had bloodwork taken, also legs examined (no atrophy, etc.) Bloodwork came back very low vitamin D3 levels (18) and within normal ranges of vitamin B12 but on the low end. So she started me on supplements which I have been taking for about 6 weeks now (2000 units D3, 1000 B12)
I was relieved initially since being deficient in these can cause the symptoms I am experiencing. I have an appointment with a neurologist first week of January 2024 (2 month wait sucks) . I will also be getting new bloodwork done the end of December to see if my levels have improved.

What has me concerned is that my symptoms seem to not be improving and I am getting new ones. Some things I am wondering if it is because I am overanalyzing everything my body does now, but others are unmistakable.

My left leg has now just felt 'off' for the past 3 weeks, it comes and goes and I don't know how to describe the feeling, I have no weakness in terms of what I can do, but it feels weak - very hard to describe. no pain but feels like something is missing. My right elbow now gets the same bubbling feeling I was getting in my right leg, and now sometimes my right thumb will move involuntarily, also sometimes my right pinky but not as frequent.

What has me even more on edge now are issues I am noticing with my mouth. Speech and swallowing are fine, but I am noticing my lower lip when in certain positions (nothing extreme either within normal motion range and then let it rest there) that my lip and chin muscles twitch uncontrollably, so much so if I put my teeth close enough together they will chatter. I can make this happen any time I want (almost effortlessly if I put a little bit of water in my mouth and let it set with my muscles totally relaxed. Also extremely slow leakage in the corners of my mouth if I let it set there, but this is something where I probably am over analyzing.

I know it can take time for the body to recover from things but I cant help but think my symptoms shouldn't be increasing now that I am on supplements for 6 weeks if that is indeed the issue.

Since it takes so long to see a specialist, wondering if any of you have suggestions on things that I should ask the neurologist about or test. The more things addressed in my first appointment the better.
If I keep my teeth together, they will chatter, too.
Lip/chin twitching is often a hydration or electrolyte imbalance issue (bloods do not show everything).
I would look at sleep (including your mattress/pillow/humidity/noise/temperature), check your sleep architecture with a wearable, nutrition, exercise, stress...no need to worry about ALS that I can see.
As I stated earlier I should get be getting a professional opinion when I see a neurologist after the holidays, very concerned. I believe this would be categorized as 'failure': I noticed when I pucker, that my lips quiver and now I can no longer whistle ( it probably has been at least a year or two since I tried today) I can barely get a sound and definitely cant maintain it even a second, lips quivering when attempting to whistle. at rest lips do not quiver at all :(
Very concerned....
That is not defined as failure in the context of bulbar onset. The first thing is typically slurred speech that only others notice. You are not describing ALS, whatsoever. Please re-read the sticky if you need further reassurance
Dax, how did the neuro appt work out? I went to 3 different neuros before I was directed to the Mayo Clinic in Jacksonville, Fla. I presented with balance issues slurred speech and drop foot. Your symptoms don't appear to match but if you are concerned I can recommend Mayo as an option.

Stay well
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