Is this ALS?

[Jalynn]

My dads speech appeared somewhat slurred around the beginning of July 2016. He went to his doctor which told him his B-12 was very low. 2 weeks later it was no better and he would choke when he ate so he went back to his doctor who referred him to an ENT. The ENT noticed his tongue twitching and referred him to a neurologist because he thought it might be ALS. Less than 2 weeks later he saw the neurologist. 2 days after that visit, he became very sick with double pneumonia and was hospitalized. He's had a CT and MRI which didn't show anything. He also had a swallow study which showed his epiglottis was not functioning at all and immediately stopped all food and drink. He goes for a feeding tube tomorrow. Anyone else have their symptoms begin so severe? He does have one arm muscle that twitches but he's able to walk and use his arms. The dr is still saying he thinks it's ALS but maybe a rare form. I just didn't realize ALS could come on so suddenly.

 

[affected]

Sadly bulbar ALS can come on that fast.

Has he been seen by a neuromuscular specialist?
I would be pushing for that so that you get a definite diagnosis.

The peg feeding tube will make a lot of difference for him as keeping up fluids and nutrition is so important.

 

[Jalynn]

No he hasn't seen a neuromuscular specialist. I'll pass this on to him. Thank you!

 

[Kristy84slp]

I am a speech therapist and my dad was recently diagnosed with bulbar ALS. I treat swallowing difficulties for a living but there is not much I can do for my father's swallow except modify his diet, teach him compensatory strategies and advocate for him to consider a PEG tube. It came on extremely quickly, for about 3 months we thought he had myasthenia gravis and just this month the neurologist changed the diagnosis to bulbar ALS. Some of my fathers other symptoms include difficulty breathing, coughing/constant throats clearing and extremely slurred and breathy voice. He also has tongue fasiculations on the right side. We are currently looking into alternative communication options. His upper and lower extremities are weak but functioning better that his swallow, respiratory system, and speech. wish
there was more I could do to help him.

 

[Jalynn]

I'm so sorry to hear you're going through the same thing. My dad got his PEG tube yesterday. I just had no idea this could come on so quickly. My heart breaks for what they have to go through with this horrible disease. It's so hard watching them go through this. Feel free to contact me if you ever need to talk.