Health Anxiety re Bulbar/ Respiratory ALS

[Louise2022]

I have read the sticky (and it has been a source of great relief to me many times!). I am 39 and female and finding it difficult to cope with health anxiety. For some reason, my fixation has been on ALS. I was experiencing overall weakness and had MRI of brain and cervical spine which came back clear. Of course, I was happy this ruled out MS, but unfortunately a quick google search confirmed those with ALS will have clear MRI's (despite my physio saying otherwise). In my HA state, this just caused me to fixate on the issue. I went to see a general medicine consultant who did the usual tests (walking on toes, walking on ankles, reflexes etc.) said he saw no cause for concern. I then saw a consultant neurologist who performed much the same tests but more of them - sticking out tongue, following pen with eyes that sort of thing. My primary concern at the moment is around the EMG/NCS that I had. It came back clear, them having tested my arms and legs. I have searched (and searched!) to find out if an EMG/NCS on arms and legs would actually be useful in diagnosing bulbar or resp. onset, however cannot find anything which confirms either way. From reading posts here, most people concerned about bulbar had their neck tested on EMG, which I did not have done because at the time, I was not experiencing the issues I have now (problems swallowing, feeling like food is going back up into nasal passage, neck spasms and weakness, breathlessness especially when lying down). Have also been diagnosed with small hiatius hernia and gastritis.

Am seeing a counsellor to try to explore the cause of my HA, and on SSRIs to try manage it.

I suppose my query is just whether an EMG on limbs would be of any value in ruling in or out bulbar or respiratory onset. And apologies if the question has been posted already - I spent some time searching so as not to duplicate, but I could not find a similar thread. This is my first post. Thank you

[Carys]

I am pleased that you are asking this question on here, some people (very wrongly) head over to the MND/ALS forums. I can't answer your medical question about the EMG on limbs, and I've no experience of the tests personally, but I do of MND in the family and others with different onset types. I will say that the issues you refer to....

problems swallowing, feeling like food is going back up into nasal passage, neck spasms and weakness, breathlessness especially when lying down

are certainly not the usual indicators of bulbar onset MND. The consultant that you saw undertook some pretty standard tests for the usual bulbar onset symptoms though, was that done recently ? What was the outcome of your time with the neurologist - what conclusion did they come to ? Reading objectively, of course the problems of breathing when lying down (is it percieved and not a true symptom - do your body gases actually alter ? The same for the 'feeling like food is going into the nasal passage' - is it actually?) and the swallowing issue can all be anxiety and the hernia/gastritis.

I didn't want to walk by and leave your post unanswered as its your first on here, and hopefully somewhere will know the answer to your question (goodness knows it is one of THE most feared conditions that produces a HUGE number of threads all the time, so somebody must know LOL)

[Louise2022]

Thank you for your response Carys! He didn't find anything concerning. It was about five weeks ago I think. In fact he wasn't inclined to order an EMG but I managed to get a referral from my own doctor for one - my doctor is the type who will give you a referral for any test you ask for, without question. This isn't always a good thing for someone with health anxiety lol. In fact I remember when I messaged him to request it (he doesn't see people in person still, because of covid) I really wanted him to say hey you're 39, why the heck do you need this test?

There's nobody in my family with this, and I try to rationalize and read up on the odds etc. In particular bulbar onset being even more rare again.