Old 03-15-2011, 04:24 PM #1 (permalink)
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Wink The Ides of March have come...

I'm actually feeling pretty good today, emotionally. We had "the talk" with our older daughter's teachers yesterday, and brought the room to tears. One of them said he felt helpless, which is how I feel as well. But this morning I woke up with a resolve and a five year plan, with a two year contingency if that ends up being unrealistic.

I know there's no way this early to give an accurate prognosis. But based on my increased weakness in both arms, just in the past few weeks and even days, I think it might be coming on faster than I'd hoped. But really, as anyone here would agree, any progression is too fast.

Last week was good physically; I was at a conference, with good sleep (without the newborn and the older one to the bus). Back at home, I'm happy to be home, but am finding the diminished sleep gnawing at my bones. Gem says I snore, which isn't good for hers either.

The Magnesium Citrate does wonders for the muscle cramps! It also loosens my bowels, so I skipped a day last week while I was presenting. Big mistake, as the cramps came back with a vengeance. For the record, it seems my sweet spot is somewhere between 200mg-300mg.

My dad pitched in with a few months supply of Ubiquinol, so I'm doing 300mg this month, with the intention of scaling back next month. No idea if that helps.

I like to think the Creatin (at 20grams right now) is helping too, but I suppose that it's helping little more than my imagination.

Now if I could find something for the twitching; it keeps me up at night.

Well, that's it for my check-in for now, good PALS.

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Old 03-15-2011, 06:39 PM #2 (permalink)
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Default Re: The Ides of March have come...

Jaws:

Is there a reason that you are self medicating?

I do think that we all are tempted to do that. The doctors tend to be a bit jaded after seeing so many ALS patients that they know are going to die. But they can keep your meds straightened out for you. I would certainly consider checking in with your neuro or specialist on what you are taking.
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Old 03-15-2011, 09:05 PM #3 (permalink)
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Default Re: The Ides of March have come...

This is all by prescription -- the neurologist told me to take all these at these doses, as well as the Rilutek.
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Old 03-15-2011, 10:00 PM #4 (permalink)
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Default Re: The Ides of March have come...

Here's what he said to take:

- CoQ10 600mg (I switched that to Ubiquinol after reading about it, and plan to let him know next time I see him. Its manufacturer suggests 200-300mg for a month, then down to 100mg.)
- Magnesium Citrate 100mg (I didn't get an effect until 200-300mg; I still get cramps at 100mg)
- Vitamin E 400mg (though the bottle says 1-2 per day, so am trying 800mg for now)
- Beta Carotene 25000 units
- Creatine 10g (I'm doing 20g, and he said there's an upcoming study at 30g I might be interested in)
- Rilutek (I forget the dosage; it's 2 pills per day. I haven't filled it yet; we're waiting for one more blood test result tomorrow before caving in to the hustlers at Aventis.)
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Old 03-15-2011, 10:01 PM #5 (permalink)
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Default Re: The Ides of March have come...

wondering why he hasnt precribed you a muscle relaxer if your having so many issues.
lots of folks are on baclofen.
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Old 03-15-2011, 10:03 PM #6 (permalink)
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Default Re: The Ides of March have come...

Thanks Liz,

I'll ask him about that. But I'm not really having too many issues, other than weakness and the cramping that I'd had. Unless it helps with twitching...

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Old 03-15-2011, 10:08 PM #7 (permalink)
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Default Re: The Ides of March have come...

it does somewhat. depends on the person and the dosage. would be worth mentioning though.
do your twitches hurt? if not, learn to love them. its actually a good thing. when they stop twitching, that means they are completely dead, so really you want twitches.
but if its hurting you, that is a different story.
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Old 03-15-2011, 10:14 PM #8 (permalink)
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Default Re: The Ides of March have come...

Ouch! And here I've been willing the twitches to stop, thinking that I'm just too high strung...

No, the twitches don't hurt. They're just annoying, lying at night. A constant reminder of the stupid denervation. I'm going to rethink that now. A constant reminder of living nerves! That's nice, thanks!

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Old 03-15-2011, 10:15 PM #9 (permalink)
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Default Re: The Ides of March have come...

My husband's twitching bothers him to the point he gets little rest.
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Old 03-15-2011, 10:18 PM #10 (permalink)
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Default Re: The Ides of March have come...

muscle relaxers should help with this. they may not completely take them away, but they should calm down.
if its affecting how well someone is sleeping, then i would say get on something.
my pals is on baclofen. has been forever. he was diagnosed almost 9 years ago. he still has twitches though.
they dont bother him, as he is used to it. personally, i love it because i know what it means and sometimes its neat to be able to see him move!
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Old 03-15-2011, 10:19 PM #11 (permalink)
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Default Re: The Ides of March have come...

speaking of the Ides of March- my best friends birthday is today, and im pretty sure than legend has it that that means I will have something to do with her death! i sure hope not.
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Old 03-15-2011, 10:23 PM #12 (permalink)
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Default Re: The Ides of March have come...

Liz,

I wouldn't worry too much about your friend, unless she's Caesar...

How is your husband doing right now? Physically & emotionally?

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Old 03-15-2011, 10:43 PM #13 (permalink)
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Default Re: The Ides of March have come...

my PALS isnt my husband.
but, he is completely locked in and has been for about 6 years. he is on a vent and has a peg.
cant move anything other than his eyes and he can smile and make a few facial expressions.
emotionally- he is great. he's the strongest guy I know. He is very happy with his life because he is still here, and he has his mom and I to take care of him. He tells me that i keep him very happy, and im glad to hear that. when you have people to support you, it makes it alot easier to continue living.
he does get upset easily, probably the EL. but its not inappropriate. I once described it as his emotions are just more easily accessed than before. he is very mentally stable and glad that he chose to vent.
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Old 03-16-2011, 10:20 AM #14 (permalink)
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Default Re: The Ides of March have come...

I'm sorry, Liz, I hadn't meant to presume.

That's great that he's strong.

How are you doing? I think that Gem is afraid of that happening to me, and the effect it would have on her. Especially since she'll ultimately need to be single mother.

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Old 03-25-2011, 10:36 PM #15 (permalink)
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Default Re: The Ides of March have come...

jaws
i have my ups and downs. quite often actually. but i find strength from all over to keep going.
what choice do we have?
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