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Saturday, June 24, 2017
I have had weakness for 6 months, brain MRI was normal. next week I get spine MRI. No EMG test yet. Passed the vision evoked response test. Feel great in the morning, can`t walk across the parking lot. Can`t carry my purse for very long. Weak arms, legs but worst of all is weak tongue, throat, neck. Scary! Sometimes it feels hard to lift my chest to breathe. The weakness is always there but I can have spurts where I can move a couch! or lift a heavy box, but I am so weak after that for 3 days sometimes! In the mornings I feel fine and even my tongue and throat feel normal, then in about an hour, my neck is tired and I feel my throat (under my chin) weaken. my question is, do people with MG get muscle twitches? I have had them all over but not bad or painfull, just a jumping muscle here & there... I am worried about ALS but since my weakness comes & goes and the tongue weakness can go away for weeks, I am hoping its something else. Just wondering about twitches though. I have seen several neurologists, but waiting with no answeres is stressful. I wonder if ALS weakness would come and go or if it is constant and worsening, even in the begining (first 6 months of symptoms). (I`m not saying the weakness goes away for weeks, but the tongue and throat and speach issues go away for weeks, arms and legs are always weak.)
Muscle twitches can be part of any neuromuscular disease, so they are not specific. Muscle twitches can be normal in a fatigued muscle. You can even see them after a heavy workout. Muscle twitches (fasciculations) are common in ALS, but weakness that comes and goes is not. The weakness of ALS is chronic, progressive, relentless. Once the mouth and throat weakness appears, it will not remit. Fatiguing weakness with fluctuations is one of the hallmark symptoms of myasthenia gravis. Let us define myasthenia gravis; it is a disease of bad communication between the nerves and the muscle, usually because our immune system is attacking that neuromuscular junction. It usually presents as fatiguing weakness of proximal muscles (shoulders, thighs, hips), diplopia (double vision), ptosis (droopy eyelids), and can even present with dysphagia (swallowing problems) and dyspnea (breathing weakness). Fatiguing weakness is a big issue, and key, especially with double vision (not blurry or burning), meaning that it fluctuates during the day (better after rest and worse after exertion). Keep working with your doctors, but keep them informed about swallowing problems or breathing problems.
Robert W Neel, IV, MD
Assistant Professor of Neurology
College of Medicine
University of Cincinnati