Newly joined. Bulbar onset MND - first bad symptom

[NeilSmith]

Hi there, this is my first post. I am a 67 year old male, retired physicist, living by myself in rural Dorset, UK. I think the MND probably kicked off 3.5 years ago; mainly with speech effects. I received a "non-diagnosis diagnosis" in January, confirmed by neurologists in May.

For about half a year before diagnosis, I had the very unpleasant experience of waking at night, unable to breathe. Getiing up, hacking and moving about sometimes helped; at other times I had to resort to a version of the Heimlich manoevre; forcing the diaphragm to "push" breathing back into operation. This persisted for months.

Working with a respiration specialist and experimenting a bit, we ended up trying Tiotropium, 18 microgram dosage. After a few days, things seemed a bit better. After a week, the "unable to breathe" symptom stopped. I was no longer waking with it. It never came back. It may have been the passage of time rather than the drug - but the timing is suggestive.

The choking on bodily fluids was also improved somewhat. It didn't entirely go away, but became less annoying. My mouth becomes very dry at night - but that is nothing compared with being unable to breathe.

 

[Nikki J]

Hi sorry you have to join us. Glad you were able to get relief with meds

 

[Nikki J]

Hi DMP I am sorry you are diagnosed too For the fals part you might want to explore Facebook if you have not yet. There is a general fals group and a couple of c9 specific ones

 

[DMP]

Thanks Nikki may do and we do have the C9ORF72 gene fault.