CRABS- the drugs not the bugs

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CRABS- the drugs not the bugs

Postby robbie » Wed Apr 16, 2008 9:43 am

What do you think is the rough number of the people using any of the CRAB drugs world wide for their MS?
Had ms for over 19 years now.
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Postby jimmylegs » Wed Apr 16, 2008 10:29 am

42.
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Postby dignan » Wed Apr 16, 2008 11:19 am

It's always 42 isn't it? I saw something saying there are over 135,000 patients taking Avonex, and I think copaxone has even more people than that, rebif and betaseron not as many...so that means it's probably at least 400,000...as a really rough guess...
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Postby robbie » Wed Apr 16, 2008 11:21 am

Finding out next week how to stick a hose up my bird to piss but my hands a pretty shaky so it will probably have to be one of the leave in kind. Is there a vitamin that can help jimmy, just a little freaked out right now.
so out of those 400 thousand the drug is only working for roughly 100 thousand .
Had ms for over 19 years now.
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Postby jimmylegs » Wed Apr 16, 2008 11:37 am

i guess it depends exactly why you need the hose, maybe there is one that could help ... hope so!
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Postby robbie » Wed Apr 16, 2008 11:58 am

when you have had ms for a while the circut in your brain that allows you to pee is damaged and you just can't tell yourself anymore.the hose makes it happen i guess anyway.
Had ms for over 19 years now.
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Postby jimmylegs » Wed Apr 16, 2008 12:46 pm

okay, although i can find this:

With multiple sclerosis, this problem may be caused by interruption of brain impulses that control that part of the urination process...

it also would seem that the mainstream dietary recommendations are to avoid coffee, alcohol, orange juice
mainstream meds are antispasticity drugs

this suggests mineral issues moreso than vitamin issues to me.

link to abstract (oral magnesium therapy combats spasticity in ms)
http://www.blackwell-synergy.com/doi/abs/10.1046/j.1468-1331.2000.00142.x

link to abstract (low magnesium, copper, zinc in ms)
http://www.mazums.ac.ir/files/onlineJournals_131508=masoud.pdf

so. the mainstream recommendations do seem to tie in nicely, since it's well researched that coffee and alcohol suck magnesium out of you (i don't know anything about the evils of orange juice so far)

i advise you to try the mg bandwagon and get yourself some of that natural calm stuff and take the usual dose at bedtime. i think it's 600mg, cheer knows. i just take pills at random times but i do know you're supposed to have it between meals. mg has helped me a lot with my spasticity issues.

just for general urinary health, maybe try cranberry juice in between beers too. or perhaps you could invent an exciting new cran-beery cooler ;)
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Postby robbie » Wed Apr 16, 2008 1:38 pm

drink alot of cranberry juice, do you think jimmy that maybe because of the way ms can be for some that i actually have nerve damage that will not respond to magnesium or copper or zinc or do u still think this will help?
Had ms for over 19 years now.
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Postby cheerleader » Wed Apr 16, 2008 2:04 pm

Hey Robbie...
really sorry to hear about the catheter. Not fun, but hopefully only temporary. Urinary retention is an MS symptom that sometimes can come and go. I know there are other guys on the boards that can relate and help you out on this (c'mon guys, don't be shy!)

Drugs being tried with some success for urinary retention are desmopressin (DDAVP) and maprotiline (Ludiomill)

Cranberry juice is great for you, and will keep away bladder infections. The magnesium, zinc and calcium supplements really helped Jeff with spasms and bladder problems (he was wetting himself until we found the Natural Calm.) It could help you, Robbie...sure as hell worth a try.
best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Wed Apr 16, 2008 2:25 pm

robbie, i think if there is a chance it can help you even partially, go for it.

what is the nature of the "interruption of brain impulses" or damage to the "circut in your brain" after all?

are they brain impulses that allow you to relax a sphincter? what interrupts them? is it a lesion, or a gap in some chemical circuitry?

maybe magnesium and some other minerals could bridge a gap between your brain and your urinary tract.

since i've been blabbing on about nutrition here, i would say without going through and counting, that to date magnesium is the winner in terms of people getting back to me about positive results.

i'm very pleased that it has helped out cheer's hubby in more than one arena. maybe it could help you in other ways than the urinary problem too, robbie.

i really hope this is the case, and i second cheer's urging you to give it a try!!!!
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Postby jimmylegs » Wed Apr 16, 2008 2:46 pm

robbie as i ponder further... that one abstract above, and cheer, are right... please do pay a lot of attention to zinc, too. it's not specific to your urinary issues, but it's pretty much a general finding in MS patients to be low in zinc. you may want to consider asking for a zinc test. when i did, it came back significantly deficient.

if you take a calcium/magnesium/zinc blend at one meal, and just plain old magnesium at bedtime, and kept it up for say a month, you could see if it was helping any.

when my zinc result came back so low, my doc said take 50mg morning and night for a month and then have a followup test. i will have to get that followup soon, guess i've been slacking on that!

holy crap i have to leave for a thing right now. so late! pathetic!
jl
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Postby Loobie » Wed Apr 16, 2008 3:05 pm

Robbie,

I wish I could help, but I have the opposite. I pee all the damn time because of over active bladder and sphincter dissynergy. I agree with Jimmy also, take them and see if they help. That sucks ass to have to do that. They need to come up with a fake system (all the way down to leaving your Johnson intact) that would allow you to just open a valve. I know that sounds facetious, but it would be awesome to only void when YOU decided to.
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Postby oreo » Wed Apr 16, 2008 3:26 pm

robbie,

Has a urologist confirmed that your problem is in fact MS. I thought for the longest time MS had declared war on my bladder. All of a sudden an out of whack PSA blood test sends me to see a Uro. Several tests later, we discover I have a prostate large enough for any four of us guys. In fact, it finally cut off my plumbing - not fun. Indwelling catheter for over two months. Last week Uro took out most of prostrate (if you really want to know how, I'll tell you). Now I can pee with the best of them - unfortunately I'm still working on getting control back but I'm told it will come.
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Postby robbie » Thu Apr 17, 2008 6:19 am

thx oreo i am going to get that checked out next week.
Had ms for over 19 years now.
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Postby jimmylegs » Thu Apr 17, 2008 6:31 am

robbie was that already in the cards before oreo mentioned it? oreo your neuro didn't think of it until they saw that psa test? i didn't think a neuro would just overlook the possibility of prostate issues. i had brought that idea up once in a different thread and in that case the prostate had already been investigated. mind you they lumped my carpal tunnel deal in with the ms for a pretty long time too. it's such a convenient catch-all.
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