Trying to remember if I’ve already posted my Dx history, but I’ll assume not and give you the summary here.
I haven’t been formally diagnosed. I’ve got terrific insurance, but so-so medical care which takes forever to get an appointment, and every subsequent appointment, test, etc., takes forever again. But here’s my history, briefly:
Ca. 2005 […] View
I also have a “hyperinflator” device, which is basically a football-shaped device that allows you to inflate your lungs fully (and more) by squeezing it, forcing air out a tube with a mouthpiece on the end. This supposedly maintains lung capacity as your diaphragm weakens and normal breathing becomes very shallow. This also serves as a manual cough assist, since once inflated, you can cough the air out pretty forcefully.
Here’s my wish-list, probably you’ve seen them all:
Wheels that don’t caster outside the width of the frame. Seat arrangement allowing you to sit down without turning around. Clips for cane, grabber, etc. Fold-down shelf and cup/glass holder.
I have a cough assist machine. Sucks and blows, but it’s kind of aggressive – I wouldn’t want to use it for breathing. My CPAP blows in forcefully and then reduces pressure so it’s easy to push out, but it doesn’t use negative pressure. I think anything that truly aids the entire breathing cycle is pretty serious stuff.
Went from 165 to 140 in the ~6mo prior to Dx, another 5 lb in the 2 mo since Dx. Can’t stand up to weigh myself any more, so any future weights will be approximations. Riluzole ruined my appetite, but after stopping that, I’m back to eating whatever I want. Mainly a liquid, high-energy, high-fat, high-protein regimen, since solid food isn’t appealing. I feel great, but I look like I just got out of Auschwitz.
A couple years ago I had pretty bad leg cramps at night. My primary care doc at the time recommended vitamins B1 & B12, and darned if it didn’t work. I’m going to start taking it again to see if it affects my ALS. Got doubts, tho.
Bill – I never had that problem. Very rarely do I startle over anything, and it creeps my wife out. However, if I walk barefoot over a grain of sand on the floor at night, I react from the pain, but I wouldn’t call it a startle reflex.
Lori – No, First noticed twitching a couple years ago – very minor. Now, I’ve lost my feet and lower legs, losing the rest of me faster than I’d like, especially hands, now noticing trouble breathing, and was put on a BiPAP machine, which helps at night. So far, speech is unaffected, but I have to use 2 hands on the mouse. Graduated over the last year from cane to walker to rollator to motorized wheelchair (next month).
I’ve had noticeable twitching for a couple years, leg cramps at night before the twitches. Vitamin B1 and B12 seemed to help, so I kept taking those, as well as about 20 other supplements recommended by several sources for neuropathy, which was what all the docs said I had since my first complaint in 2018. Twitching got worse, several docs commented on it, but it didn’t ring any bells until one of the sharper docs I saw commented that she was “concerned” that I presented as though I had MND. Once that stone was turned over, my neurologist gave me a formal ALS DX on Jan 24, and it’s all downhill from here. The twitching doesn’t really other me, other than as a reminder of what’s to come.
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This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.