Worry after worry- now respiratory onset

DT90

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I do apologise for what follows, but I am incredibly worried. I am a male in my early 30s. In early September I began noticing rippling in my right calf. Soon there was twitching all over including my trunk and left eyelid. I had subjective feelings of weakness in my right leg and left hand. I was referred to a neurologist who is an ALS specialist. My clinical examination was normal. It included a test of my strength, my reflexes and a look at my tongue and mouth etc. Nonetheless, while he was very unconcerned, to be on the safe side he referred me for an EMG of the arms and legs. I had this and was told it was entirely normal. However, I was also concerned that I was slurring my words and was sounding nasal so I had a bulbar EMG too- the neurophysiologist told me there and then that this was also normal. However, I have now started worrying about the very rare respiratory onset form of the disease. From what I have read widespread twitching can be an early symptom. I have also noticed that in the last two weeks my voice has become nasal and hoarse and breathy and that I have a weak cough and I am not sneezing though have watery eyes. When jogging I've noticed jolts in the stomach when taking a deep breath though I can still walk long distances without difficulties and am not currently noticing breathing difficulties when climbing stairs. While I am genuinely reassured by the EMGs on the arms, legs, and bulbar areas, I have not had one on the thoracic/diaphragm area and I am now really stressed about it all. I am seeing my neurologist shortly and I don't wish to try his patience as he is convinced I have BFS but I'm really worried and don't know where to turn or what I should think. I am thinking of organising some lung function tests which I gather can show muscle weakness where there is a significantly reduced reading in the supine position. At any rate, any thoughts would be welcome as I am so terribly worried.
 
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lgelb

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If you had respiratory onset ALS, there would have been abnormalities in multiple muscles on your two EMGs. GERD, allergies and dry mouth can play a role in the symptoms you describe and are all completely treatable. However, what seems most urgent to treat is your health anxiety, which will ruin your life if you let it. Do discuss a counseling referral with your GP, along with the possibilities above.

Best,
Laurie
 

DT90

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Thanks, Laurie, I plan to do so.
 

DT90

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Sorry for the further post but I do wonder if I should push for an EMG of the diaphragm when I see my neuro just for peace of mind- getting worried about my cough and the diffuse twitching. Is there anything he could look at there and then when I see him? Maybe my shoulder and neck strength.
 

Nikki J

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No. See Laurie’s reply above. If you must, ask for breathing tests. But you should listen to your doctor’s advice rather than try to direct your care.

diaphragm emgs are very very rarely done. The only people I ever knew to have them were being evaluated for diaphragmatic pacers when they were being used
 

Bestfriends14

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Please don't take an EMG appointment from someone who needs it. Equating a cough to respiratory onset? Seriously? Can you talk without your face going red? Do others hear your breathlessness when you talk? Can you tie your shoes without losing your breath? Most likely you can, so respiratory onset, or any other ALS onset for that matter, is not in your picture. Do go and speak to your GP and see what he/she suggests. You do not belong on an ALS website and that is a wonderful thing.

Good luck to you and please take good care.
 

DT90

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Well I've seen the neuro and he does not consider an EMG necessary which I accept. I should add that I am still able to do 3 mile walks in 45 minutes while carrying 10kg on my back without feeling breathless (just a bit puffy) which even I can accept isn't exactly consistent with respiratory onset- and whilst I'm not massively comfortable lying supine I am not breathless either and can manage half an hour or so pretty comfortably. So while I might get my lung function looked at because of my wheezing when speaking and what seems to me to be a weak cough I do feel calmer and can consider the matter closed. Thanks everyone.
 
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