Is this bulbar?

[veryworriedmom]

I am grateful for any responses to this question and to those who give their time to read this.

I am waiting for a follow-up appointment about some symptoms, which include leg muscles on one side wasting away, feelings of weakness and extreme muscle soreness, some walking difficulties and something wrong with my throat. I've had an MRI and it was clear. One of my reflexes in my affected leg is abnormal (but I forget whether it is diminished or enhanced and I don't yet have the notes).

I'm a long way out from any potential diagnosis but I did have a question about swallowing difficulties and bulbar symptoms. I did not find an answer in the stickies.

I have trouble swallowing, especially clear liquids. It takes me two or three 'gulps' for all of the liquid to go down. I guess my question is - what happens when you try to swallow and have ALS bulbar symptoms? I don't feel like I am choking or aspirating. What happens is I swallow and a little bit of liquid remains in my mouth, so I swallow two or three more times then it has gone. (I can't even recall what is 'normal' swallowing). I am perfectly capable of swishing food around with my tongue and my speech has not started to slur. Sometimes food gets stuck but usually if I try really hard it goes down okay.

I do have a constant feeling of a lump in my throat and I am aware that this could be anxiety-related as there is clearly something wrong given the extent of atrophy.

Thank-you in advance for any responses. Regards.

 

[Atsugi]

I don't see ALS, bulbar or otherwise, described in your post.
A bulbar expert will be along soon, I'm sure. Maybe even one from Oz.

Get a swallow study.

 

[veryworriedmom]

Thank-you so much Mike. I appreciate you replying, and I appreciate the hope it gives me. My children need me to not show my health anxiety. And I will remember to ask for a swallow study. Thanks again.

 

[ckck]

I do not presume to know all the ways bulbar onset manifests itself, but you experience does not match what I went through. My very first indication was speech impairment, followed by swallowing difficulties. I did have significant tongue fasciculation's. The swallowing difficulties are a matter of trying to swallow and it just doesn't work. It is my understanding there are many causes for swallowing issues, and I wish you luck finding out what is happening to you, but it doesn't sound like ALS to me.

Ken

 

[lgelb]

Chris,
Before posting further on the DIHALS threads, so that these questioners can have more perspective on your brief answers, could you share with us, on the "newly diagnosed" side of the house, your own story?

Best,
Laurie