Off Label Medications

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KevinM

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Damn, Kim, now that’s a regimen if I ever saw one! I’m screwed because I won’t give up my 2-3 beers a day and occasional cigar! Oh well.

Seriously, though, I continue to marvel at your apparently very slow progression, especially for limb onset LMN dominant. I know we are all snowflakes, but a part of me holds out hope for a similar course. Of course I could never be as disciplined as you with your supplements and diet, but I’ve gotten some great tips on supplements that I will try to incorporate. Tudca might be a real problem, though, with my GI issues

From this and previous posts, it sounds like you are still pretty much fully functional (albeit slower and with lots of pain from ALS and your other pathologies). However, it sounds like you can handle all basic activities without assistance. How would you score yourself on the FRS? If this is too personal a questions, please let me know. Keep it up, my friend. Best, Kevin
 

Nikki J

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04/2014
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To give another perspective I am limb onset LMN dominant. Onset 6 years and 11 months ago. No dietary restrictions. Intermittent supplements. Consistent Riluzole. Still independent. One aunt who had almost identical onset to me lived 16 plus years independent for more than 10 years. No riluzole no supplements no diet. Eventually had a feeding tube the last couple of years. We just don’t know whether anything we do makes a difference because we don’t know what would happen without it.

all we can do is read , talk to our doctors and other people and do what we believe is right.
 

KevinM

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PALS
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That’s incredible, Nikki. Both you and Kim are in rarified air, and I think there are several other members who have had very slow progression. It is unusual to find LMN dominant cases with that slow a progression. Here’s to hoping I’m another one!

Thanks for the sound advice. Thanks, Kevin
 

GXTrex

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Loved one DX
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12/2020
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Thanks for your responses. The wide variety of progression worries me of course. Sometimes I feel as though he could be ok for a few years and other times I start panicking with everything I think he will need. I was able to get ahold of his EMG. Would I be able to post it for you guys to take a look at? The doctors haven't gotten into much detail with me and I would be curious of your opinions.
 

KimT

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The Beach
Kevin, I think my score is 43 and has been that for the last year.

I can still go up a flight of stairs without holding onto the rail. Coming down is a little scary, only because I've fallen, due to stupidity, before. My breathing actually improved after I lost 10 pounds which was mainly belly fat. I didn't intentionally lose it but I was in the pool every day for months. I was also walking 1/2 mile every day until I developed plantar fasciitis and a sprained foot from walking too fast in the wrong shoes. Then I gave up all grain and the belly fat went away.......almost. I'm still up 20 pounds from when I was running and biking every day.

I'm an open book. Nothing is too personal for me to answer.
 
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