Dx needs confirmed

[SLCRN88]

My mother in law has been to Cleveland clinic in Ohio and in Florida to see neurologists. She has also seen a neurologist locally, Lima, Ohio. No one will give her a ALS Diagnosis. They say she may have bulbar palsy. Her problem is with her tongue and she can't talk and is starting to have problems swallowing. She doesn't have extremity weakness at all. She has had so many tests and she is on the ALS medication and one for the crying and laughing from the bulbar palsy. Does anyone know about this bulbar palsy and if it is terminal? I think it can be. Her only change has been in her throat and tongue. Maybe a cranial nerve involvement. She is going to a als support group, and I am thinking about starting one in Lima. Closer for her and I know there is a need locally for others. Any sites that would help with understanding her type of symptoms and anyone have info on how to start a support group. I am a nurse and know some local neurologists. I have also done hospice, and supported many ALS patients and their families or support persons.

 

[DavidGL]

My mother in law has been to Cleveland clinic in Ohio and in Florida to see neurologists. She has also seen a neurologist locally, Lima, Ohio. No one will give her a ALS Diagnosis. They say she may have bulbar palsy. Her problem is with her tongue and she can't talk and is starting to have problems swallowing. She doesn't have extremity weakness at all. She has had so many tests and she is on the ALS medication and one for the crying and laughing from the bulbar palsy. Does anyone know about this bulbar palsy and if it is terminal? I think it can be. Her only change has been in her throat and tongue. Maybe a cranial nerve involvement. She is going to a als support group, and I am thinking about starting one in Lima. Closer for her and I know there is a need locally for others. Any sites that would help with understanding her type of symptoms and anyone have info on how to start a support group. I am a nurse and know some local neurologists. I have also done hospice, and supported many ALS patients and their families or support persons.

Hi,
That's where I am right now--suspected bulbar palsy. Apparently, when one shows signs of bulbar muscle weakness but there are no confirming signals for MND, one ends up in that catchall bucket. It just means we have weakness but why is *not* known. I am told by my first neurologist that he knows of people who have had "bulbar palsy" for 15 years. I first noticed voice hoarseness in spring 2005. I have only progressed to some small difficulty with speech, small difficulty with swallowing and difficulty with getting a good solid breath. Also--cramping and stiffness in lower legs with minor balance difficulties. All of these later symptoms developed during summer of 2006. I am now seeing a neuro in an ALS clinic to try and clear up all the loose ends (full spinal MRI, lumbar puncture). Only one EMG (negative) so far--last June.

As for terminal--life is terminal by nature. If her progression from initial symptoms to where she is now has been over a timespan measured in years, she may eventually succumb but, who knows? She may die of a heart attack long before. The main thing is not to get overly anxious, and just go with the flow.

Bottom line--it's a waiting game. You take medication to relieve the annoying symptoms and wait to see if things get worse. And just make sure all other possibilites are ruled out. It's not a great story, but the story is far worse for those diagnosed with classic ALS.

Also, be aware that if you are doing 'net research on bulbar palsy you will get a lot of hits for something called Progressive Bulbar Palsy. That sounds pretty serious, but it is *not* the same as a diagnosis of "Bulbar Palsy". BTDT. PBP bad. BP not so bad.

DavidGL