Bulbar ALS questions and insight please?

[rickson407]

So I'm still having problems swallowing. I keep on chewing and chewing and it's like my swallow reflex will not kick in but when I do finally swallow it goes down just fine and I don't choke on it. So I'm confused. Also, I have no issues swallowing liquids what so ever its just solid food. Someone here on the forum said it's not failure to swallow it's swallowing and then choking on the food you're swallowing due to muscle in-coordination. Can someone with bulbar please clarify for me (or someone that knows a lot about bulbar)? Also, just a back story this has been going on for 10 months already and I don't have slurred speech or anything and I've been told that slurred speech is normally the first to come along with Bulbar? I also feel like since its been 10 months for this going on that I would have progressed somewhere else as well as far as symptoms go because I've read that Bulbar Onset ALS is typically more progressive. The problems swallowing came out of nowhere too. It was like one day I just woke up and had issues with initiating the swallow response which people with ALS have told me that it doesn't just happen over night like that either. I'm a 26 year old male also. Just looking for insight and clarification. Thank you and God Bless.

 

[affected]

My husband is bulbar onset.

You keep coming here every 3 months or so, starting a new thread and asking the same questions?

I can assure you, it is highly unlikely this is bulbar onset ALS, it sounds nothing like it. But hey, I'm not a doctor, I wonder if you have had doctors telling you this also ...

You should be seeing doctors after all the advice you have been given so kindly here for many months, not coming back and asking the same all over again. Please stop doing this to yourself.

I am not going to describe in detail what my husbands symptoms started and progressed like or we will be inundated with people reading it and jumping to the conclusion they have ALS because they think have one single something a bit like that.

Get to a doctor, have your symptoms investigated, please.

 

[rickson407]

Thank you for your response affected. I did go to the doctor and had a barrium swallow study done with liquids and it came back fine. So I know that I keep doing this to myself but the symptoms are not just in my head unfortunately and if they are I wish I knew how to reverse it. I don't come on here to make a mockery or anything of the such and I respect everyone's advice that I do receive on here. I just wanted to clarify that what I was told by someone here that had Bulbar Onset ALS was correct in that situation. That is all. I truly am trying to get it resolved and work out everything I need to, to better myself. Honest I am. Again, thank you for your response and God Bless.

 

[affected]

Glad to be able to assure you with my response as someone living with bulbar onset ALS, that your symptoms do not match this disease.

Please tell your concerns to your doctor, many things can cause your symptoms, so keep working with them, but let ALS be put to rest and open yourself to what paths they feel should be investigated.

 

[rickson407]

Thank you so much Affected. I can assure you that this will be my last post and my last thread that I start. You all are so humble and yes, stern at time, but I wouldn't want it any other way. I wouldn't want someone to sugarcoat me like a candy. Again, thank you. I have learned a lot while dealing with my symptoms and I will always pray for everyone affected by ALS whether it's the person directly or the family and caregivers. Again, thank you and God speed to each and everyone of you.