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Old 10-11-2008, 01:32 AM #1
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Smirk i guess i should have known

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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Old 10-11-2008, 09:18 AM #2
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Quote:
Originally Posted by drb1264 View Post
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.
Well guess now you can D/C the pump. Sounds great always good to hear stories like that. Never having been chair/scooter bound 24/7 can't imigine what high your feeling unless its like the ones I use to get running 12 miles a day. I bet your feeling a great sence of accomplishment as well you should. Way to go!!!
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Old 10-11-2008, 09:26 AM #3
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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:
Originally Posted by drb1264 View Post
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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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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Old 10-11-2008, 11:49 AM #4
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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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scheduled to start Tysabri 03/05
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Old 10-11-2008, 12:20 PM #5
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Welcome to NeuroTalk! What an inspiring story!
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Old 10-11-2008, 12:39 PM #6
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Great Intro, Dan..
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Old 10-11-2008, 01:01 PM #7
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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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Old 10-11-2008, 01:06 PM #8
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Welcome to NT Dan! Glad you found us!
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Old 10-11-2008, 05:23 PM #9
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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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Old 10-11-2008, 10:50 PM #10
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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.
Quote:
Originally Posted by JoeMac View Post
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
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