Limb onset changing over to Bulbar

[KevinR]

Does this or can this happen? I asked my MND doctor and he told me no it doesn’t cross over. But it sure seems like I read something on this site? I searched but couldn’t find anything.

 

[Nikki J]

Do people with limb onset go on to develop bulbar symptoms? Yes Usually as limb weakness doesn’t kill us so we either die of something else first or get bulbar and or respiratory involvement along with the limb symptoms. The limb symptoms don’t change go away bulbar gets added. My sister was arm onset, my aunt leg they both had bulbar symptoms and ended up unable to speak or swallow.

If you are having bulbar symptoms now consider what to do. Feeding tube? Voice banking? Eye gaze? I am sorry you are dealing with this

And if this is what you meant and your doctor said it can’t happen I hope they just misunderstood because otherwise you need a new doctor

 

[lisa g]

I started out with limb onset and developed Bulbar symptoms but so far haven't had any respiratory issues. I second what Nikki is suggesting, if you're having any problems swallowing have a feeding tube placed. I had mine placed early and am glad I did. I use it for 90% of my food intake and have maintained my weight and have added a couple of pounds, which is very important for PALS. I am still able to eat ice cream and other soft foods by mouth.

Secondly, if you haven't already done voice banking and still are able to speak start voice banking now. If you contact the Gleason Foundation they'll provide you with the voice recorder and set you up with a speech pathologist to walk you through the process. I banked my speech and was able to have it installed on my Tobii device for future use.