I apologise in advance for the following ramble.
I am a 30 year old male. Late in August I began noticing twitching (including rippling) in my right calf which soon spread. I now have them in my trunk, stomach, arms, shoulders and even my left eye. At onset I felt subjective weakness in some limbs especially my left hand but there wasn't any failure.
I began seeing a consultant neurologist in the middle of September who is an expert in ALS. My clinical examination was entirely normal (it included strength and reflex tests) but to reassure me he sent me for EMGs of my legs, arms, and neck/tongue. These were all clear and the consultant told me I have BFS. I am genuinely reassured regarding my limbs and bulbar area. However I have now become concerned about respiratory onset ALS. Whilst I know this is incredibly rare and I would be unusually young I gather that widespread twitching can be a symptom. I have also been conscious of changes in my breathing and speaking in recent weeks. It is true that I can still do long, pacy walks every day (typically cover 3.5 miles in 45 minutes at lunchtime) without needing to stop or without feeling breathless. However I struggle to speak without wheezing and while I am not terrible lying completely flat on my back there does seem to be a difference and my face can look somewhat flushed after 30 minutes of it. My cough also sounds a bit weaker in my view. My voice sounds different too at least to my ears- lower and a bit raspier. That said I'm not yet having sleep issues or problems on waking with drowsiness etc and there's still quite a lot of power in my voice but I suppose it is early days. I discussed all this with my consultant but he was not concerned and has not referred me for a diaphragm EMG which is fair enough. Kindly he has also agreed to see me every now and then. Nonetheless I am still terribly worried and I am now trying to get a referral for a lung function test which I gather can be a good predictor of respiratory strength when done in a supine position. I was wondering if others think that is the right approach- I feel so scared especially in the current climate and don't know where to turn. I do apologise if I am wasting anyone's time and I do not intend to disrespect those who have been diagnosed.
I am a 30 year old male. Late in August I began noticing twitching (including rippling) in my right calf which soon spread. I now have them in my trunk, stomach, arms, shoulders and even my left eye. At onset I felt subjective weakness in some limbs especially my left hand but there wasn't any failure.
I began seeing a consultant neurologist in the middle of September who is an expert in ALS. My clinical examination was entirely normal (it included strength and reflex tests) but to reassure me he sent me for EMGs of my legs, arms, and neck/tongue. These were all clear and the consultant told me I have BFS. I am genuinely reassured regarding my limbs and bulbar area. However I have now become concerned about respiratory onset ALS. Whilst I know this is incredibly rare and I would be unusually young I gather that widespread twitching can be a symptom. I have also been conscious of changes in my breathing and speaking in recent weeks. It is true that I can still do long, pacy walks every day (typically cover 3.5 miles in 45 minutes at lunchtime) without needing to stop or without feeling breathless. However I struggle to speak without wheezing and while I am not terrible lying completely flat on my back there does seem to be a difference and my face can look somewhat flushed after 30 minutes of it. My cough also sounds a bit weaker in my view. My voice sounds different too at least to my ears- lower and a bit raspier. That said I'm not yet having sleep issues or problems on waking with drowsiness etc and there's still quite a lot of power in my voice but I suppose it is early days. I discussed all this with my consultant but he was not concerned and has not referred me for a diaphragm EMG which is fair enough. Kindly he has also agreed to see me every now and then. Nonetheless I am still terribly worried and I am now trying to get a referral for a lung function test which I gather can be a good predictor of respiratory strength when done in a supine position. I was wondering if others think that is the right approach- I feel so scared especially in the current climate and don't know where to turn. I do apologise if I am wasting anyone's time and I do not intend to disrespect those who have been diagnosed.
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