Diagnosis

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Arose

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Hi, I’ve never used anything like this before. A few years back my dad began slurring his speech, he’s almost inaudible now and can’t eat, swallow really. Today he is receiving his PEG feeding tube and is getting a bi pap… it’s been almost 5 years since his symptoms started. We haven’t even been told he has an MND, but they have brought up bulbar palsy. I don’t understand why it takes this long to diagnose, I mean I know it’s hard to diagnose. I also wonder if it’ll even help if and when we do get a diagnosis? I’m not even sure what I’m looking for in this post. I’m pretty lost these days..
 

Nikki J

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Hi
what kind of doctors is he seeing? What diagnosis is on his chart? Bulbar palsy is a diagnosis but they have not confirmed it Just mentioned it?
 

Arose

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He’s been seeing speech pathologists, pulmonologists and neurologists as well as gastrointenologist as he’s lost 45 pounds from not being able to eat properly. He’s been dealing with this for years and has been very quiet to us kids about what’s going on so I am unsure if his chart has a diagnosis or not. As far as we know he says he doesn’t know what’s wrong with him and the doctors don’t either. Within the last six months with the weight loss I’ve been starting to do research because i started realizing something severe is happening. It’s taken me far to long to realize this, but I didn’t understand what was happening with his speech before. I asked him recently if the doctors have brought up some of the MND’s with him and I went through the list and he stopped me at PBP but he said they didn’t actually diagnose him. So that’s all we have for now. Wednesday he has a neurology appointment and I’m wondering if we’ll actually receive a firm diagnosis.
 

Nikki J

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Go with him if you can or facetime in. He should be seeing a neuromuscular specialist at a major medical center if he isn’t diagnosed. Good luck
 

Bestfriends14

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Oh my, what worry this must be causing you, and rightly so. I second what Nikki said for you to go with him or FaceTime a neuromuscular specialist to get an answer. I can't understand why at this stage there's no formal diagnosis when his symptoms have been progressing.

Please do come back and let us know what's going on. I'm sorry you are having to go through this.
 

Arose

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Hi everyone thanks for reaching out my father was just diagnosed yesterday with bulbar palsy, so I guess now we know.
 

Clearwater AL

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Get Real
The Forum does have a sub-forum for Bulbar Palsy... maybe keep us updated as it goes.

Scroll down to "Related Conditions."
 

Bestfriends14

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I'm so very sorry for the diagnosis. As Al said, there is a section for Bulbar Palsy. I don't know much about the condition at all, but within that sub-forum there are knowledgeable folks.
 
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