Old 02-23-2013, 11:11 AM #1
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Post worried about what lies ahead

Hi all
I am new on here and looking for support and advice.
My father developed a stammer a year ago which has progressed over the passed year. His speech is now very slurred and sometimes he cannot get any word out at all, for a few minutes. His swallow is impaired and he coughs a lot.
MRI and barium swallow inconclusive
His neurologist says his tongue is small and fasciculating
MG investigated, ACH Abs and MUSK Abs negative (he also started on pyridistigime, which hasn't helped at all.
He is now waiting for results of EMG and nerve conduction studies. . .
Help and advice much needed please x x
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Old 02-23-2013, 11:19 AM #2
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Default Re: worried about what lies ahead

It looks like you are doing all the right things, be patient and let the drs do their thing. There is a ton of help here. There is a thread for devices on just about every thing I suggest you look at some of those. There are computer programs for speech assistance if he can type. There are helpful hints for everthing from opening jars and closing buttons to transfering in and out of cars, showers and bed.

You are obviously a very good daughter and very proactive. Just be there for him and we will be here for you . I wish you peace. (((((hugs)))).
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Old 02-23-2013, 12:26 PM #3
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Default Re: worried about what lies ahead

Thankyou Vicki

That's what I need to hear I think, just want to make sure that we are not missing anything. His mobility and fitness remains good thank goodness so just wait and see what the results bring.

Can they diagnose from the results of the EMG and nerve conduction studies ( along with all other tests already done) ?
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Old 02-23-2013, 12:36 PM #4
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Default Re: worried about what lies ahead

It is a complex diagnosis process. The EMG was the final tool in my diagnosis. They had to eliminate approximately 20 other conditions, have the progressive weakness and then the the deennervation/reinnervation pattern that is distinctive of ALS. It took them approximately 3 years for definitive diagnosis, though my neurologist said he had a probable diagnosis 2 years earlier. Until he had the dirty EMG he didn't want to say for certain that I had ALS. Good luck and remember each one of us progresses at a different rate.
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Old 02-23-2013, 12:36 PM #5
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Default Re: worried about what lies ahead

Diagno sing is a process of elimination but there are people here that got diagn osed after an emg and the symp toms they had. Some it took months and some it took years. It took 5 years for me but I am not saying it will take that long for your dad.

If it turns out to be als there are great clinics and support groups out there and they have loan closets to help with equipment some help with home remodels to accomodate disabilties.

This is a wonderful source of info and support. the people here are wonderful too. Maybe after a while your dad could check this out too. Just hang in there and keep up the good job.
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Old 02-23-2013, 04:49 PM #6
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Default Re: worried about what lies ahead

Thank you both, I'm trying to keep positive but also preparing myself for whatever?
This site and everyone on here is so inspirational.
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