Status
Not open for further replies.

gigi1

New member
Joined
Feb 19, 2017
Messages
3
Reason
CALS
Country
US
State
ca
City
Manhattan Beach
HI,

I'm new to the forum. What is the progression for Bulbar ALS? It seems that progression can vary greatly - slow for some and fast for others. But, if it starts with the loss of speech, would it progress downwards (arms to legs)? Or, can a person with Bulbar onset start with loss of speech and then loss of legs before arms?

My husband does not have an official ALS diagnosis. He started out with hoarseness a year ago, then his speech started to slur about 6 months ago. He was seen at a certified ALS clinic in February.

Doctors Impression:
Progressive dysarthria with LMN changes of his tongue and EMG evidence of mild fasciculations in the deltoid and trapezius. The most likely dx is unfortunately progressive bulbar atrophy as seen in ALS.

He's had a plethora of testing. MRI/Lyme/Genetic, and more - ALL of which are negative.

Thank you for taking the time to read my post and respond.
 
My PALS began with slurred speech in July '14.
Diagnosed Oct '15, at that time, Neurologist noticed some weakness in his ankle area as well.
He hasn't spoken since probably July '16.
Feeding tube Sept '16.
He is barely walking now and his hands are affected as well.

Everyone seems to be different though.
 
Gigi,
What is the diagnostic plan for your husband? There are several ALS centers in your area and a second opinion is always advised.

To answer your question, bulbar onset has no set "next" as to arms, legs, right, left, etc.

Best,
Laurie
 
Hi Laurie! Thank you for your reply. My husband has a follow up appointment in June, and he plans on getting a second opinion after that appointment at another certified ALS center. For now, we've changed his diet ( all organic/grass fed meats/healthy fats like coconut oil/avocado, organic vegetables/leafy greens). We are also trying to keep a positive mental attitude.
 
Status
Not open for further replies.
Back
Top