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#11 | |||
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Magnate
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I'm so sorry for all you're going through. I'm only glad the lp is showing something, for all you've been through. Not that I want ya to be abnormal, but you know what I mean. I'm glad there's news.
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Anybody who doesn't think a dog can smile has never dropped a piece of bacon. |
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"Thanks for this!" says: | ewizabeth (11-22-2008), weegot5kiz (11-21-2008) |
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#12 | |||
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Elder Member
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hello, rest is important, the roids will help, and maybe, seeing no one else mentioned it, make sure you can set docs appts up so you can go with a buddy, remember the buddy system when swimming, I went once with out Deb and regretted it, had a bad trip
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. History doesn't repeat itself, but it does rhyme.............................Mark Twain . ....... . ... . |
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"Thanks for this!" says: | ewizabeth (11-22-2008) |
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#13 | |||
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Grand Magnate
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i'm sorry you're having such a rough time.
i'm also glad your dr got to see all your sx's and pain, even tho i wish it wasn't happening to you. he sounds like he's doing all he can. i hope the meds work for you and you get thru all this to feel better.
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Judy trying to be New Skinny Butt ______________________ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. -------------------------------------- "DESIDERATA" by Max Ehrmann |
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"Thanks for this!" says: | ewizabeth (11-22-2008) |
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#14 | |||
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Magnate
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I chewed gum throughout my IVSM experiences
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__________________
2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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"Thanks for this!" says: | weegot5kiz (11-22-2008) |
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#15 | |||
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Member
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Legzz - you are still SuperWoman in my book. What a trooper! Your sense of humor and positive outlook takes a very strong person.
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Brenda . Dx with RRMS 2/05 Avonex 3/05 LDN 11/08 |
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"Thanks for this!" says: | ewizabeth (11-22-2008), lady_express_44 (11-22-2008) |
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#16 | |||
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Magnate
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When I had IVSM I discovered TicTacs were my friends! I popped those suckers every 5 minutes, and I should have bought stocks in them! Between the TicTacs and the Smarties, I got through the steroids, but now I am hooked on them! (I buy Smarties by the two pound bag!)
![]() Rest Rest Rest!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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"Thanks for this!" says: | ewizabeth (11-22-2008), weegot5kiz (11-22-2008) |
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#17 | |||
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Senior Member
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Smarties should come with "WARNING: The surgeon general has determined that Smarties may be habit forming."
I used Altoid fruit flavored candy and that worked really well.
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A Hairy Chicken Is Better Than A Hairy Hand! |
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"Thanks for this!" says: | ewizabeth (11-22-2008), weegot5kiz (11-22-2008) |
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#18 | |||
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Elder
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I am sorry you have had such a bad time! I can totally relate to horrible headaches and the throwing up stuff...been there too many times to even count! But....there is hope!
My advice to you about IVSM as a very experienced IVSM user...yep USER...I have discovered that having it mixed with D5W instead of saline serves a few purposes...1) it cuts down on that nasty nasty taste and 2) it's much kinder on your veins and 3) much less sodium in your system which equates to less fluid retention and weight gain!! Now mind you...I have had more 3-day IVSM infusions than I can even count at this point in time so these are tricks that have worked for me....they may not work for everyone, but they do work for me! Helping with the stomach upset...oh yes, that would be me! Slimfast or Atkins type shakes...they taste good and are low calories. Even those new breakfast shakes or liquid yogurt. Anything that coats your stomach. Helps immensely. I cannot tolerate gatorade but others swear by it but you need to push fluids. Anything...water, cranberry juice, anything without caffeine. Caffeine dehydrates you. Eat small meals. As for the oral taper....you will find opinions all over the place, but personally, not me. I get no benefit from it, does more damage to my stomach than I get benefit from the taper. I don't get the "high" from the steroids so there is no need to taper me off. I sleep and am lethargic from the IVSM and oral steroids do nothing to help lengthen the effects of the IVSM... Some people have problems sleeping so if you doc won't give you a sleeping aid by RX, get an Over the Counter sleep aid. There are plenty out there so talk to your pharmacist. I don't need it. To get rid of the nasty taste - sucking on lemon drops or peppermint candies...Riverwild had some good suggestions as did Gazelle. Good luck and I am glad the headache went away. Don't be surprised if you get one from the IVSM...it's normal but will go away. Also be prepared for the red face. That will go away too. ![]()
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Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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