Rapid progression of friend

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MTaylor

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Nov 20, 2015
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Friend was DX
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US
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Kansas
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Pittsburg
I don't know all your abbreviations as I am new to this forum. And if I break any "rules" it is certainly not on purpose. I am a psychiatric RN and have become very close to another RN on my unit and her wife. In the course of 1 year, her wife has lost the ability to speak and swallow. She got a feeding tube 2-3 months ago. She is rapidly losing weight even with feeding tube. Her balance is getting worse - she uses a cane now and still falls. As she was losing her ability to speak we were taking her to doctors to find out what was going on. (And that was a terrible experience with doctors who kept telling her it was all in her head. She even had a GI Dr try to force a swallow study on her as he was yelling at her. But I digress.) She kept saying it felt like one leg was longer than the other. Her muscle EMG's they eventually ran at Mayo showed no lower neuron involvement. She was initially diagnosed with pseudobulbar atrophy which was recently switched to bulbar onset-ALS. Now she has foot drop on right side and wears a brace. Needless to say she is exhausted all the time. (But I'll be damned if she doesn't smile and give a thumbs up when you ask if she's OK.) Her hands are becoming stiff and she can no longer use the pill crusher.
I guess what I am curious about is the timelines I have seen on this thread seem so much slower than her progression. Would she be classified as "rapid progression"?
 
Re: PLS progression timeline

This is the PLS subforum. You said your friend was given an ALS diagnosis. PLS ( Primary Lateral Sclerosis) is a very different course and generally much slower progressing. The people whose posts you just read have PLS. What you describe is not unusual for ALS unfortunately
 
Re: PLS progression timeline

Thank you. I am sorry that anyone has to deal with this! I accidentally posted on the PLS thread. LOL. I obviously don't know my way around here yet. Hopefully my friend and her wife will get a lot out of the forums and the wonderfully strong people here. I am sorry you and your family have to deal with this. :)
 
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