Bulbar onset worries

[Sam Sam]

I am worried about Bulbar onset. In the last 6 weeks, I have had difficulty catching a full breath. I also have stiffness in my collarbone and shoulder areas. My swallowing is progressively more difficult and I have a weird feeling in roof of throat toward back. Overall upper body stiffness. I’ve had people check me out and they say I’m fine. But I can’t breathe well. Neurologist thinks I have polyneuropathy. My sister passed away two months ago from ALS. She experienced some of this too. Just worried

 

[Nikki J]

I am sorry about your sister

You were short of breath last year. If you had als respiratory failure it would have progressed significantly. You had an emg and were diagnosed with polyneuropathy. If you have the same neuro and have seen them recently they would note any changes. Go to your pcp either way. Perhaps you need to see an ent. It doesn’t sound like als. Of course your sister had breathing and swallowing issues but I doubt she had the whole picture you present.

I don’t expect you to believe us as you did not before. Please work with your doctors

Previous thread Feeling the possibility of ALS

 

[Sam Sam]

Thanks. I have been to my primary care twice and he doesn’t notice anything. The oxygen thing reads fine. But I still can’t breathe well. Neuro checked me out 6 months ago. He doesn’t reveal a lot. Ives’s I need to ask him a bunch of questions. Not getting a full breathe and squeezing feel in neck and throat is so uncomfortable. Does polyneuropathy possibly lead to ALS by any chance?

 

[ShiftKicker]

Polyneuropathy is an issue with the peripheral nervous system. MND is a condition of the central nervous system. Two entirely different animals. If you are unable to get answers from your current neuro, you will have to find another neuro who can help you with this or ask your gp what your next steps are. You have been given a cause for your symptoms, so an ALS forum is not helpful for you- it's like going to a clothing store to purchase food.

We do sympathize and understand it can sometimes be difficult to advocate for yourself with medical professionals, but this is what you must do. There are many support groups and sites online to find information about conditions affecting the peripheral nervous system- they would be way more helpful and better support for you and will be a good place to find advice about your diagnosed condition.

Please take care