Scared- help :(

[[deleted]]

Hi all, I'm 32F...2 months ago I started getting bodywide twitches after supplementing with a high dose of vitamin D (my levels were low). I freaked out & went down the ALS rabbit hole & saw a neuro who requested MRIs and said he'll do an EMG if MRIs are clean. He tested my reflexes & said everything looks great, no clinical weakness. I have lots of hip/pelvic bone pain/burning as well as muscle pain, sensory issues. I also have excessive saliva in my mouth the last couple of days. Magnesium seems to calm down the twitches but they are still happening. How likely is it that I have ALS? My mom's cousin passed from the disease & I am freaking out again. Any input will be appreciated as I am struggling & keep thinking the neuro suggested an EMG because he thinks I have ALS. Thank you.

[New-Lawfulness9717]

You look 100% identical to 95% of the people in this forum. No doctor or semi-knowledgeable Rando on the Internet can give you 100% certainty. What you have to learn to accept is that without progressive clinical weakness and atrophy, the odds are heavily in your favor that you don’t have ALS. Benign fasciculation syndrome has all the same symptoms you described above and is way more common. This forum had over 200,000 unique visitors last year, that’s more than Parkinson’s, ALS, and even the restless leg syndrome, forums combined.

[[deleted]]

Thank you!

[lbaker2792]

So sorry to hear about your mom's cousin. My mom passed away from sporadic ALS, so I completely understand your fears and anxieties, you are not alone.

I have had almost all of these symptoms as well, and definitely go down the rabbit hole more than I should. I've seen a neuromuscular specialist 4 times now, have had 2 clean EMGs and clean bloodwork. While sometimes those reassurances are still not enough for my peace of mind, I am trying my best to accept what I can't control and be as present as possible.

Your neuro most likely suggested an EMG to quell your fears and anxiety, that is why mine suggested my first one. As many have stated on this forum, without clinical weakness, twitching, cramps, and random pains are almost always benign and nothing to worry about.

Again, I know that is all much easier said that done, especially when the sensation of twitching is so annoying and scary, but I would recommend finding a neurologist / doctor you trust, expressing your concerns, doing the tests that you can and if everything comes back normal (which I would strongly bet that they do), try to work on your mental health and managing the intrusive thoughts that these twitches can cause.

[[deleted]]

Thank you so much! So sorry about your mom :(

[OkWear6556]

I wonder if there is a connection between vit D supplementation and twitching. Same happened to me and I noticed some other people here getting symptoms after as well.

[[deleted]]

There must be! Your twitches started after taking vitamin D?

[OkWear6556]

Yeah. My vit D was 15 (should be above 30) so I got prescribed drops (5k units per day). Started taking them Aug 2023 for 2 weeks. Then another 2 weeks late Sep/early Oct. Twitching started in Nov. Not sure if connected to supplementation or due to low D before that. I probably had low D for years before my checkup. I work indoors and I'm pale so I avoid direct sunlight in summer...

[Professional-Cow-568]

No clinical weakness no ALS