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#1 | ||
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Junior Member
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Hi, i'd like to tell all of you a little about myself seeing how i am knew and unsure. I was diagnosed in 2004. It all started because i went to have a phisical because i hadn't had one in a long time. The doctor asked me after the routine phisical if i any questions or problems i might want to tell him. I told him that really the only thing was i had double step vission to the left perifrial but i would have to see about a vission test for that and also i was having a balance isue. He told me that he wanted me to go see a nuerologist to see about this balance issue. Next thing i knew i was in a M.R.I. and diagnosed with M.S. to be quite frank, i had know clue what the hell this M.S. monster was. Boy do i ever know what it is now. I have had 2 exasperbations since and up to the last 6 months i was 96% in a wheel chair. I'm not swaring that TYSOBRI is the reason i'm not in a wheel chair but only 10% of the time but who knows. I started off on avonex went on to copaxon and after my second exasperbation tysobri which now i have been on for 10 infussions. For 3 and a half years in a wheel chair can you try to imagine standing up and walking. Don't get me wrong it wasn't just stand up and go. I also have a surgically implanted baclophin pump mixed with morphine. I take nuerotin, zoloft, methidone and several vitamins everyday. All in all by the grace of GOD I'M WALKING after 31/2 years in a wheel chair can you imagine the high i get from that ! To say it was because of the tysobri i can't but thats my story and i'm sticking to it.
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"Thanks for this!" says: | dmplaura (10-11-2008), doydie (10-11-2008), Girlie Girl (10-13-2008), Jappy (10-12-2008), JessieSue (10-11-2008), Koala77 (10-11-2008), Riverwild (10-11-2008), SallyC (10-11-2008), Twinkletoes (10-11-2008), TwoKidsTwoCats (10-11-2008), weegot5kiz (10-11-2008) |
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#2 | |||
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Junior Member
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"Thanks for this!" says: | drb1264 (10-11-2008) |
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#3 | |||
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Member
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We all have SIMILAR stories here man, the diagnosis process sometimes even takes forever too and some here are not even diagnosed YET but have so many issues....
ticks ME off that the docs sometimes don't have a CLUE as to what we go through and some even think we are all hypocondriacs..........they try this and then try THAT and if something doesn't "click" then they give up on us..........They seem to be practicng on us, maybe that is why they call a doctors business a "Practice"........LOL I even had ONE doctor ask me, well are your symproms dibilitating in any way like can you walk?.........I felt like screaming NO I am not having trouble walking but why can I barely SEE and why do my eyes burn and why am I numb all over.... For being a very healthy person all my life the symptoms I was HAVING were VERY dibilitating to ME just BECAUSE they were not my NRMAL me...............She refused t treat my symptoms, (it seemed), unless I couldn't walk or couldn't use my arms or was completely BLIND............well they are FINALLY listening to me NOW because all my symptoms have put me out of work. My sympoms bacvk THEN were the same as NOW only NOW they are VERY much WORSE whereas they could have been treated way back and MAYBE not BE as bad as now....... OH, don't get me started on doctors........BUT I am sure, (at least the COMPASSIONATE ones) are just as frustrated as we are. I think it is awesome that you are walking again after all that time in a chair man, I wish you continued success.... Oh, I am from Erie, Pa also, glad you don't need those snow tires anymore for your chair, NOW you need a good pair of BOOTS.........LOL Joe Quote:
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Dxd RRMS 12/23,06, Copaxone 2/07 to 9/07 - Rebif 10/07 to 7/08, BAD flare with Transverse Myelitis & Pancreatitis.....,9/08 Pseudo Cyst!!!! and another TM attack. Started Tysabri 9/22/08 - 10/21 Allergic reaction to Tysabri, SSDI Approved 11/14!! Continued Ty 11/17 with a Pre-medicate. Solumedral 12/11-12/13 Ty #5 Jan 12th! |
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"Thanks for this!" says: | drb1264 (10-11-2008) |
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#4 | |||
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Magnate
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Hi DRB and welcome to NT!
![]() Regardless of what helped you get out of the chair, the fact remains that you ARE out of it for the most part! What a GOOD feeling that must be! Stop in to the Tysabri thread and post your story? http://neurotalk.psychcentral.com/thread37891.html There's lots of us there and I think your story may inspire and I am sure you have a LOT to contribute!
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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: |
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#5 | |||
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Magnate
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Welcome to NeuroTalk! What an inspiring story!
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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: | drb1264 (10-11-2008) |
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#6 | |||
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In Remembrance
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Great Intro, Dan..
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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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"Thanks for this!" says: | drb1264 (10-11-2008), weegot5kiz (10-11-2008) |
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#7 | ||
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Member
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Thanks for your intro. It's good to meet you. I'm in PA too, but SE. I'm glad to hear that Tysabri's working for you and glad you're walking. That's wonderful!
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"Thanks for this!" says: | drb1264 (10-11-2008) |
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#8 | |||
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Senior Member
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Welcome to NT Dan! Glad you found us!
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[[ ABBA Free Zone ]] . Rob Thomas, beautiful, beautiful, beautiful man! . . |
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"Thanks for this!" says: | drb1264 (10-11-2008) |
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#9 | |||
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Grand Magnate
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welcome to NT.
what a story. i'm glad that T is working so well for you. you've been thru a lot. i'll be looking for your posts.
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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: | drb1264 (10-11-2008) |
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#10 | ||
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Junior Member
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it's great to know that there are people that can almost feel my pains and understand what it is i'm saying. it's almost like i have known you for years. I realy think thats great.
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