Scared of ALS. Twitching and brisk reflexes

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Ashtree2020

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Hi. I am a 38 year old female and started experiencing twitching in my left thumb back in July of this year. I also experienced pins and needles that would move from limb to limb. I went to the dr where she diagnosed me with a pinched nerve, low b12, and low vit D. I also have some pretty strong anxiety. She sent me home with b12 shots, a prescription for anxiety, and a prescription for physical therapy. The physical therapy helped quite a bit and the twitching stopped for the most part. After completing PT in November, I began with muscle twitches all over my body. I tried Chiropractic care, to no avail. I called the dr back, was sent for a cervical MRI, and all came back normal. They have now referred me to a neurologist who will not see me until June of 2021. I’ve also started experiencing some muscle tightness in my calves and sometimes certain fingers. This comes and goes. The twitching is unnerving. At times, it’s random on every muscle imaginable, jumping from my calf, to my stomach, to my shoulder. And other times both calves will twitch simultaneously. It’s mostly noticed when I am sitting or laying down. The PT said my reflexes are brisk (level 3) and I’ve noticed I’m very jumpy. I’ve also started waking up with night sweats. How concerning does all of this sound? I’ve tried contacting my doctor again and am waiting on a call back. I also have an appointment with a doctor who specializes in hormones to see if maybe that could be causing these issues.
 

Ashtree2020

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I saw my Doctor this morning. She is rechecking my b12, iron, potassium, and magnesium levels. Along with some thyroid/hormone levels. She also checked my reflexes which she said were still within a ‘normal range.’ She said the low B12 is probably the cause of the pins and needles and even some of the lightheadedness, but she did not think it could cause the muscle twitches. She would not rule out ALS. She did try to reassure me that we had a plan and we needed to just keep our focus on it. But also said that ALS can start with fascinations all over before any weakness is seen. Now, I feel even more terrified. Does anyone have any advice on this? Does this sound like ALS?
 

lgelb

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No, it doesn't. Pins/needles/lightheadness and widespread twitching all argue strongly against ALS, as does your lack of clinical weakness.

The "hormone paradigm" can be a slippery slope. I would make sure you're being followed by and having conversations with a "regular" internist. Also, B12 deficiency requiring shots isn't just a random occurrence, so I would either track down a cause or question the conclusion (and want labs to back it up). Unfortunately, there are docs who make their money on injections that are not relevant and can be harmful.

Likewise, would reconsider the "prescription for anxiety" with another doc.

Best,
Laurie
 

Ashtree2020

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Thank you, Laurie for getting back to me! My lab results can today and my B12 levels have corrected with shots. Thyroid and all other vitamins were normal. Only my testosterone was high. This was all done by my PCP, so it was legit. I was administering the injections myself. She has no idea what caused the b12 to bottom out in the first place nor did she seem concerned. I have started acupuncture to assist with the anxiety before trying a prescription. I am still having the twitching all over while at rest and still feeling very jumpy some days. I’m trying to walk as much as possible and keep myself active. I just cannot figure out anything else that could be the cause of the widespread twitching and June seems so very far away. Thank you again for your reply.
 
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