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Sep 23, 2007
Loved one DX
HI there!

I was reading you forum in interest and would like to ask a few questions relating to bulbar palsy.
My mother was diagnosed (clinical diagnosis) on Thursday last week.

The symptoms started in April. She had a very sore throat and doctor gave some pain killers - saying it was probably a virus. She also said that she had a verbal confrontation with a work colleague and that during this she felt something 'ping or snap' at the back or base of her tongue , this pain has not subsided. Around the same time she began to slur some words - however this co-incided with her front denture plate slipping (very poor fitting).

However, I'm a little confused and would like your feedback.
I know there should be little to no pain asociated with ALS - but my mother has been complaining of pains in her neck and the side of her tongue. She feels as though the neurologist has completely dismissed this. They have performed an (ETG? I think thats what its called) It has shown excellent electrical impulses to all areas of her body. But It seems they did not perform this on her neck/tongue area.
She has had MRI scans, and various blood tests - and latest ETG tests (taken prior to consultation) will not be available until Tuesday this week. My mother has been resident for testing at the hospital for 5 days when this was diagnosed.

I feel on the whole the consulting team have been a little premature.

What are your experiences? can someone advise general diagnostic protocol?

Thank you!
My father-in-law was also diagnosed with bulbar ALS after sore throat/voice hoarseness/difficulty swallowing. It took several months to get to this diagnosis, and he had a feeding tube placed at the beginning of all this. His EMG lit up like a Christmas tree on his tongue area. He was put on Lyrica before the ALS diagnosis because of severe left-sided facial pain that was said to be nerve pain. His cervical spine was broken twice in the past and he had TMJ surgery about 20 years ago, so it could have been related to that as well. Fortunately, he has been doing very well with Lyrica and has had no pain since about 2 days after starting it. It doesn't stop other types of pain like sinus headaches and such, though.
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