Muscle weakness and fasciculations. Could it be ALS?

[Tifris]

Hello! I am a 24-year-old woman from Romania. I am diagnosed with Basedow-Graves disease, hyperprolactinemia, and hyperandrogenism, for which I am undergoing treatment. I am writing to seek an opinion while waiting for my appointment for an EMG.

In mid-October 2024, I suddenly felt muscle weakness in all four limbs. The day before, I had undergone an MRI with contrast at the head to check for prolactinoma, without signs of demyelination being observed. I felt my upper limbs heavy, and it was difficult for me to climb five flights of stairs. After about five days, the weakness disappeared, and I felt normal for the next two weeks, after which it returned.

In the following weeks, the weakness presented itself in episodes, with a few days of feeling weak, but I could do my usual activities without issues, followed by a few days when I felt fine. If I woke up feeling weak in the morning, I remained weak throughout the day, but if I woke up feeling good, the weakness wouldn’t develop during the day.

In December, it was the first time the weakness started during the day after I had drunk coffee. Since then, I woke up feeling perfectly normal, and the weakness developed throughout the day, being most intense in the evening.

Having a family history of myasthenia gravis (my aunt), I went to a neurologist for the first time on January 8th, thinking I might have inherited this disease. After the neurological examination, the doctor noticed a decrease in reflexes in my right upper limb and a decrease in grip strength (20 and 22kg).

I did blood tests, including antibodies for MG, creatine kinase, other hormones (aldosterone, growth hormone, parathyroid hormone), Lyme disease antibodies, lupus profile, vitamin D, and B12, all of which were normal. During the follow-up, the neurologist performed an NCT, which came out normal.

Seeing that all tests were normal, I started to panic and began considering my greatest fear—ALS. After 2-3 days of obsessively thinking about it and searching for stories from diagnosed patients to see what their first symptoms were, I began having frequent muscle fasciculations (every few minutes), most commonly in my feet, calves, thighs, but sometimes also in the trunk, arms, eyelids, lips, and jaw. These triggered intense anxiety and were immediately followed by a stabbing pain in my lower limbs (which I can’t necessarily describe as spasms), and the muscle weakness worsened significantly, much worse in the last few days than it was from October until last week. I have difficulty walking, even around the house, climbing stairs is hard, my arms feel very heavy when washing my hair, I feel the dishes with food are heavy, but I can still do all these activities.

I am scheduled for an EMG on Monday, and I am extremely worried. My mother insists that all these symptoms, which appeared after I started thinking about ALS, are due to my hypochondria (which I admit has caused new symptoms in the past, but never so severe). That’s why I wanted to ask for your opinion, as I believe you are more informed than I am.

Do you think there is a real possibility that it could be ALS?

 

[ShiftKicker]

Hello, please read here, as it answers your questions about what symptoms indicate something other than ALS: Read Before Posting.

Sensory issues, issues that come and go or improve point away from ALS. While I can't speak for what your symptoms may mean, there is such a thing as seronegative MG. You also have life affecting auto-immune issues and are being treated for such. Have you discussed your symptoms with your treating rheumatologist?

Take care

 

[lgelb]

I would definitely discuss with your endocrinologist, and bring a food/medication dosing diary with annotations of when the weakness comes on relative to these events. You may need a medication adjustment. I see no reason to think of ALS.