Another question for those with bulbar issues

[rose]

Hi, I have have the appointment with the neurologist at Johns Hopkins set for the 14th; and have been running over in my mind all of the different problems I've been having. .. For those that have been diagnosed with ALS, has it affected your sense of taste? I ask this because I do have Sjogren's Syndrome which can do this, but my Sjogren's is not very severe. Originally my doctors were trying to attribute my nerve involvement to Sjogren's but that theory at this point has pretty much been discarded. From what I understand about motor neuron disorders, the sensory ability is left untouched. So, I'm thinking it is the Sjogren's, but would like to know if others have had this happen. I think my sense of smell is still okay, but then, on the other hand, the taste loss was so gradual, that I may not notice if other abilities are decreasing as well. thanks

 

[Al]

Hi Rose. My smell and taste are unaffected.
AL.

 

[fiddleplayer51]

Hey Rose,
My husband's bulbar onset ALS has not affected his taste or smell. I'll be thinking of you on the 14th as you go to Johns Hopkins.
All the best,
Jane

 

[sherry0459]

Rose

Hi, I too, have not had any change in my taste or smell. Hope you get your answers soon. I know how hard it is to wait and not know. God bless, your in my prayers. sherry