PBP..is it same as ALS?

[fifty5coop]

I'm new to this forum but have been reading your supportive posts. My brother was diagnosed in Nov of this year with PBP and he said the doctor stated ALS also. Is a PBP diagnosis the same an ALS diagnosis? The neurologist told my brother that his arms, legs, and lungs would eventually be affected...currently he has very slurred speech and difficulty swallowing. I have many more questions but wanted to ask this one first as he needs to have an ALS diagnosis in order to get any VA benefits, correct? thanks.

 

[sesl]

I believe there is a form of PBP that is isolated to the bulbar region of the brain - it never progresses further than the speech/swallowing difficulties. However that is extremely rare. Most people with bulbar symptoms go on to develop other symptoms - limb weakness, breathing difficulties etc. In some places this is more commonly known as "bulbar-onset ALS."

When my mother was diagnosed they did nerve and electrical tests and determined that her limbs are affected (the neurons are damaged or dying) but at this point she doesn't really experience any symptoms in her limbs. But she will. So the diagnosis is ALS, not PBP.

I don't know about the implications for Vets, but if he has ALS they should be able to give that diagnosis from his test results.

sesl

 

[BethU]

My first visit to a neuro, I was "diagnosed" with PBP, but that is not the same as ALS. My impression is PBP is usually more a symptom ... it indicates a progressive weakness (palsy) in the bulbar region (which affects speech, swallowing). It's like fever or pain ... it can be caused by various conditions.

For an ALS diagnosis, a number of criteria have to be met. There is a sticky on the forum that describes what is required for a diagnosed.

 

[Cherry]

My husband was diagnosed as having both p.b.p and A.L.S. in September. The trouble was we can't be sure when it all started as the throat problems, swallowing, pain, were being masked as he'd had throat Cancer. He also has radiation damage of the Larynx. His limbs are getting weaker with a general feeling of fatigue, but he's had those problems for some time even before he saw the neurologist.

Best wishes, Cherry.