What are my next steps? Depressed and scared of being misdiagnosis of ALS

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I hope everyone is doing well - my developing story below and it scares me. I'm a 24 yr old female, have hypochondriac but never experienced something like this. Scared of a misdiagnosis (like ALS or MS)

-Muscle started twitching around** July 2018**(started at one spot and then all over)

-June 2019 Did blood work - report came back fine with the exception of Vitamin D deficiency (My Vitamin D level was around level of 13 NG. my primary physician said this is very normal because in Cali SF, we don't get sun much) Not sure if muscle twitch was related but that was my primary concern plus daytime fatigue/getting drained by 9pm**

-Prescribed 1000 IU to take daily, did for one month straight and did not see improvements so now I occasionally take it whenever I remember

-4 months ago - November 2019 started experiencing diffused muscle pain (no spasms) but my joints/nerves/muscles ached one day. thought it was a flu but the symptoms never subsided. pain lingers, one day could be horrible and next day pain lessens, feels like repeat.

-Went to neurologist December 2019 came back with clean emg/ct scan but was still worried sick.

-Experience stiffness of wrist and fingers/heavy fingers from time to time. I have since taken vitamin D daily and planning on upping the IU.

I feel so miserable and depressed, the neurologist told me with a clean emg and ct scan theres nothing much to worry about and referred me to physical therapy. I've been having alot of anxiety, (e.g. crying), writing a will, etc. I dont know what to do anymore.

Ive read many stories that after 6 months of twitching, if theres clean emg then I am clear but I feel like my symptoms are escalating.

Has anyone in this forum experienced this? I am hoping Vitamin D is the culprit but as time goes and symptoms worsens, Im just afraid of misdiagnosis of something that is even more serious

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  • Posted

    ALS shows up on EMG way before symptoms appear most of the time. If you had a clean EMG and these symtoms going on your EMG would have showed ALS patterns and the neuro is trained to spot these signs. With a clean EMG for now i wouldnt worry twitching is non specific and be related. Twitching could literally be anything, diet, post viral, metabolic, literally anything. I too was obsessing over ALS and it literally wrecked my life. Anxiety can even trigger twitching and physical pain. Have you heard of BFS? Benign twitching? Look it up.

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  • Posted

    als isn't just twitching, it's muscle atrophy aswell. I'm currently in the same boat, clean emg of arms and legs as of 2 weeks ago, twitching started in upper left shoulder in 2015, same spot it started I had an indent in my arm. Since then muscle atrophy in knees, breathing issues that now require c-pap because all of the sudden I have sleep apnea. My original start of twitching in my arm lasted a month, before moving on someplace else. I'd say without any atrophy als is much slimmer than someone with atrophy.

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    • Posted

      did you get a ct scan/mri? I would say because its 5 years since your first symptoms, I don't think its ALS. Have you gotten your VITs taken? Lack of Magnesium can cause muscle twitching and Vitamin D can cause bone pain.

      Do you feel any pain as well?

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  • Posted

    I had all that done within the last 4.5 yrs, recent ct of head. My sleep study came back as severe apnea so my throat muscles are weak, abdomen is always tightening, ear pain everyday. I'm sure of what it is, it's just a matter of finding where it's originating. Many people go many years with symptoms that are mild before they progress. My 3 yr old has MD, and looking at my mother who the last few years is having issues with her legs and muscle loss, but refuses to see anyone, I'm thinking it's familial. unfortunately she was adopted so I have no family history on her side.

    My issues were very slow, I've managed for yrs up until December when the meds I took exacerbated everything, now I have the apnea, and my Sp02 is constantly dropping during the day.

    As far as pain, I have alot of it, arms which is where the muscles loss and twitching first started in oct 2015, my back is starting to cave in which caused terrible pain. have you had any further testing done ? The looking for answers gets very frustrating.

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