Question: Do limb onset symptoms always progress to bulbar ones?

[musicsmiles]

The Bulbar Onset

Hello,
My husband was diagnoised with the Bulbar onset of ALS. He has all the symptoms. He has trouble swallowing, slurred speech, drooling, and some difficulty breathing, especially when he is laying flat on his back. He has weakness in his hands and some in his arms, he has no weakness in his legs yet, thank god. Anyone else with these symptoms? I heard also, through reading and other people that people with this kind of onset has even shorter life span. I sure hope that their is some kind of mircle medicine before my husband is gone.

Musicsmiles

 

[Al]

Hi musicsmiles. Generally speaking, people with bulbar ALS do not last as long as people with limb onset. There are people on the forum that have had it for 5 or 6 years so do not lose hope. The breathing difficulties you describe are what I had when I needed the Bipap to help me breathe at night. I think I remember in a previous post that you are going to the clinic soon. If it is not soon call and tell them about your husband's breathing. That is very important.
AL.

 

[Marjorie R. Wilcox]

which came first/chicken or the egg

RIck had severe sleep apnea first.... then limb(leg) onset and deterioration of leg muscles. He has no slurred speech or trouble swallowing. He absolutely cannot sleep without his machine or he won't breathe. He staggers when he walks but has full strength everywhere else.

 

[hearts_and_thoughts]

With my sister, she had limb onset. She later developed bulbar symptoms before she passed on. It was the build up of carbon dioxide that took her peacefully in her sleep. God bless her soul...I miss that lady. She was strong, graceful and courageous.

However, my father and my brother both started with bulbar symptoms. I was only 4 when my father passed on and don't really know if he ever had total loss of use of limbs or not. So far, my brother still has his legs but has lost use of one arm and as of today, I have had to lift his 2nd arm up for him and it is nearly a total loss for him. He cannot breath without the bipap and oxygen and he panics if he is off for no more than a minute. His speech is inaudible and very slurred.