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09-22-2009, 05:42 PM | #21 | |||
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Grand Magnate
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hello and welcome to the board.
you've gotten some great advice. i was dx'd at 53y/o in '03. in '05 i had to give up my nursing career because i couldn't keep up with the physical demands and 12hr shifts. i've learned several things. to be gentle with myself. and, to take each day one at a time. i've also learned to expect changes but to adjust to them the best i can and with the help of my "team". i would suggest that you get a 2nd opinion. that's always a good idea when you have a serious medical problem going on. also, start to keep a medical file on yourself. get copies of test results and copies of your mri's. if you ever see another dr they will want to see for themselves. i was dx'd with 2 O-bands on my spinal tap and lesions in my brain and spinal cord. however, i was dx'd first with the mri's alone. you don't have to go thru another LP if you don't want. are you on any of the MS drugs? some of us aren't on meds but from what i've read it's best to start a tx early to help down the road to decrease disability. be sure to keep your personal power. be your own best advocate. and slowly pick a bunch of drs that will work with you as a team. YOU are the team leader. there's a difference between fearing the future and being prepared. if you have a disability find out how you can work with it to make your life easier. ie: using a cane for balance. you might want to consider having life insurance because you have a baby. try to think thru what you might need to protect yourself and your family. sometimes doing things while you're young is easier. if you work consider long term disability insurance if your business offers it. things like that may give you peace of mind. sorry i've been so long winded. just a bunch of ideas and things that i've considered.
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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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09-23-2009, 06:00 PM | #22 | |||
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Magnate
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Hello and welcome!
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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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09-24-2009, 01:32 PM | #23 | |||
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Elder
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Lots of great advice here...we're a group who have been through very different experiences, but we're a great place for info, advice, and support from those who know what you're experiencing and feeling...
It's okay to be scared...but it is not okay to delay getting information that will help you and your dr. be better informed. If you don't want to go through an LP, I can totally understand that, but make sure you don't delay tests because you are afraid of what you'll find out. Knowledge is power, after all. I was told in '91, over the phone, mind you, that based on xrays on my back, that the dr. felt I'd end up in a wheelchair from arthritis. Jerk. Some drs. tell patients things that have no basis, and needlessly frighten us. I have days when I am afraid of what MS will bring into my DH's and my life...the unknown is the great equalizer in life...but at least we know what we are battling, and that there are drs. who are absolutely fabulous about taking the time to inform us, and to support us. Keep us posted, won't you? We're here for you P.S. I don't know the handshake, either
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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: | Desinie (09-25-2009) |
09-28-2009, 09:36 PM | #24 | ||
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Member
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Welcome to the forum! It's scary having an incurable disease and a new baby. I started having symptoms right after my daughter was born and was dxd when she was 7 months old. I've read that it's not uncommon to have a flare after childbirth. Taking care of her was a bit nerve-wracking because of weakness in my hands and arms - she started walking at 10 months purely out of desperation, I think!
I just want to say: don't think that any symptoms you may have now are necessarily permanent. Speaking from my own experience, it's possible to have a very bad flare after giving birth, and still remit to pretty near normal. So don't panic! I don't blame you for not wanting another spinal tap. Horrible!!!!! I hope you find a good neuro you can work with.
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msarkie "Never try to teach a pig to sing. It wastes your time, and annoys the pig." |
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"Thanks for this!" says: | kentucky_wildchild (09-29-2009), Lady (09-28-2009) |
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