Worried about als and mnd

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New member
Dec 17, 2022
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Hi! I’m a 18-year-old girl and have scary symptoms. My test results suggest myasthenia gravis, but some symptoms just doesn’t fit in the picture.
From 14th August i’ve been experiencing muscle weakness all over my body that gets worse with physical activity, accompanied by cramp-like muscle pain more pronounced on the right side of my body. But after 2 months, my right side started to become weaker from head to toe.
I went to a neurologist in October, who did a simple exmination, my reflexes were fine, so was my strength, but she noticed that my right quadriceps seems smaller than the left. It’smaller indeed and according to some pictures of me taken years ago, there always have been differences in shape between my thighs, but I haven’t noticed it yet. But now I see it pronounced and also feel weakness and instability in my right leg. It’s about 1cm thinner than my left, not just the thigh, but calves also. At that time i was scared of having multiple sclerosis. Then the neurologinst referred me to several examinations. NCS was done in 4 nerves only on right limbs (no repetitive stimulation) and EMG was done only in right quadriceps, the results were normal, according to the doctor it ruled out myositis, myopathy and nerve compression. Blood test was all okay, vitamins, minerals and CK too. Lumbar-sacral mri of my spine showed no abnormalities, neither did my brain, so multiple sclerosis was ruled out.
Then the neurologist suggested this myasthenia disease, sent me to a blood test evaluating AChR-antibodies, and that came back positive. But unfortunately I read several articles about cooccurrences of ALS and MG and that people with als can have positive AChR antibody levels.
And not all my symptoms fit into mg. I do not have ocular signs as i should have with myasthenia. The piridostigmine (medicine for mg) relieves a bit the generalized weakness in my body, but I do have more expressed weakness on my right side it has no effect on. The right side of my face, tongue, neck, shoulder, right arm, hand, back, hip, butt, leg, feet are weaker, feels heavy, hard to move. When working out it becomes tired extreme fast, and sore. My neck, back muscles feels like pulled and muscle strain and my arm very worn-out. I dont’t have foot drop yet but it requires big force to raise my feet when walking. I notice asymmetry too. For me it seems like my muscles on the right side won’t contract properly enough in comparison to the left, and the right side of my tongue is smaller than the left, so is my neck. I not only have a feeling, I see it. Can all these be caused by my suggested myasthenia gravis (it’not 100%established yet, i was sent to an MG centre)? I’m extremely afraid of having some untreatable motor neuron issues.
I know, i’m only 18, the chances are small, but not zero, and no one can tell who will be affected. And my symptoms are scary. I still haven’t had the chance telling all of these to a doctor, at the time of my last visit at the neurologist, it wasn’t this expressed. And I’m afraid that the EMG was too early, didn’t examine all the nerves, affected muscles, and was done only on one side. And quite a few mnd people have clear EMG.
The first thing I would say is that at 18 you should not be trying to outsmart your doctors.
Your symptoms don't line up with ALS so I will quote you to demonstrate: "I went to a neurologist in October, who did a simple exmination, my reflexes were fine, so was my strength."
This is so common here. You say "I’ve been experiencing muscle weakness all over my body."
You do not have the hallmark of ALS which is the clinical weakness the doctor was testing you for. This is critical.

Everyone has differences from one side of their body to another - in appearance, strength and function.

Please read the post at the top of this forum titles READ BEFORE POSTING as it answers all your fears clearly.

Return to your doctor and express your fears and ask them what is next. Then believe them and follow their advice.
That is the best thing you can do. I hope you get answers soon, but they are truly not here.
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