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#11 | |||
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Grand Magnate
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Well, that just stinks. I'm so sorry, Keri.
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Rochelle . . I've lost my mind ... and I don't miss it! LIFE HAS NO REMOTE -- GET UP AND CHANGE IT YOURSELF! |
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"Thanks for this!" says: | RedPenguins (03-05-2009) |
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#12 | |||
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Legendary
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Oh no! I'm so sorry to read this.
Please feel better soon, and know that we're all here thinking if you. ![]()
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Eastern Australian Daylight Savings Time and my temperature . |
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"Thanks for this!" says: | RedPenguins (03-05-2009) |
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#13 | ||
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Junior Member
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Sorry to hear you are having yet another exacerbation. Please let us know what the Drs from JH say when you hear from them.
Good luck laurie f |
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"Thanks for this!" says: | RedPenguins (03-05-2009) |
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#14 | |||
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Elder
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So sorry to hear you're doing poorly...keep us up to date on what's going on...
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Instant Karma's gonna get you-gonna knock you right in the head...John Lennon |
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"Thanks for this!" says: | RedPenguins (03-05-2009) |
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#15 | |||
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Magnate
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Sorry to hear that your troubles are back again Keri. You've tried so hard and endured so much and it's just not fair!
Let us know what is going on. You're in new territory here and I have no advice, just hugs and prayers that you get some answers and relief.
__________________
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: | RedPenguins (03-05-2009) |
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#16 | |||
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Magnate
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Keri, I'm so sorry about all this. You keep trying so hard, and MS keeps biting you in the behind.
Know that we are all thinking of you and hoping for the best.
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Mair . |
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"Thanks for this!" says: | RedPenguins (03-05-2009) |
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#17 | |||
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Member
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Well, right now I am seriously considering re-dosing with HiCy as my next course of action. Not thrilled about it - but not sure I have many choices. My MS seems to be extremely aggressive - and I just can't "stand still"....
![]() 5 relapses since January 2008 when I was diagnosed. My neuro called it - said I wouldn't got more than a few months without an exacerbation. I do go 5.5 months after HiCy....but that's about it... Seriously depressed here...and these fandangled (nice G rated way of putting it!!) steroids are NOT helping my mindset. I feel like I am losing the battle big time.... ~keri |
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"Thanks for this!" says: | SallyC (03-05-2009) |
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#18 | |||
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In Remembrance
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I hear you Keri. If there is a chance that hicy will work better this time, I would go for it. Nothing else seems to be helping.
Best of luck this time.. ![]() ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#19 | ||
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Member
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Keri, so sorry to hear about this. I hope that things turn around for you soon -- you've been through so much!
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#20 | |||
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Senior Member
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Hi Keri,
I am sorry to hear what you have been going through. If it is of any consolation to you, I had 4 relapses a year, some of them overlapping the other. This was from 2000 to 2002. The two years were living heck. ![]() The next two years, 2003 and 2004, I had two relapses a year. Each lasting 8weeks, leaving residual damage with each remission. I always did high dose oral steroids with these DMD's when relapsing. I had to stop all DMD's due to other complications with them. I continued to relapse twice a year, being my normal, and did the high dose 10 or 5 day course of IVSM. My MS doctor would only give me oral or IVSM with a space of 6 months in between, no sooner due to the high dosage. This was to give my body a chance to start making it's own cortisone. The adrenal glands produce the equivalent of 35-40mg of cortisone acetate per day for all people. Sometimes the oral or IVSM showed benefit right away. Other times it took it's good old darn time to bring me back to my baseline. I can understand your frustration having 4 in a year and probably one so far in 2009, that you have. It is scary, I know. With Relapsing MS it is the nature of the disease to have these crapola relapses. Also with the uncertainty of where and when they will occur. ![]() I hope your relapses calm down. Maybe the steroids will make a difference this time. I just wanted to give you some hope that it is possible. ![]() I know this is the other side of the coin from what your doctor is saying. I just wanted to give you some food for thought. You and your dr are the best judge of your health. This was just my two cents worth. JMO I wish you well, take care. ![]()
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LADY May happiness be at your door. May it knock early, stay late, and leave the gift of good health behind. "Life is what it is". We can only focus on controlling those things we can control, we must let go of the things we can't. |
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