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The Stumble Inn The place for social chat for our M.S. community.  |
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| The Stumble Inn The place for social chat for our M.S. community. |
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06-02-2010, 10:08 AM
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Wise Elder
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Hi Carla! Welcome to NT! Sorry to hear that Fred & Bob decided to take up residence with you and currently there is nothing they can do for you. Are you doing chemo and/or radiation?
Ataxia was part of my 1st major MS flare. It took me a year to be able to walk better - without falling, without bouncing as I walked, etc. It is frustrating and yet funny. One of my dds begged me to use my cane more often as she didn't want others to think her mom was a drunk.  I can totally relate to what you are going through.Keep us posted and updated on how you are doing. 
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06-02-2010, 11:56 AM
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In Remembrance
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Welcome to NeuroTalk, Carla.
 So sorry as to why you are here, but I am glad you found us. Give F & B a big kick in the *** for me, will ya. 
__________________
~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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06-03-2010, 01:54 AM
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Senior Member
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Welcome Carla,
We love to have new members. Fred and Bob must play a major factor in your health. I hope they can do something to help you with removal or symptom management. Glad you found NT. If we can help you, or if you can help us, that would be very good. We learn from each other. We learn something new every day. Nice to meet you.
__________________
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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| "Thanks for this!" says: | Carla Hurst (06-03-2010), SallyC (06-03-2010) |
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06-03-2010, 03:43 PM
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#14 | ||
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Junior Member
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Hi back... Thanks. Odd really. Spent years holding my breathe (strong maternal-family hx of Huntington's Disease) so when the stumbling and such started at 47 I just thought I hadn't dodged the bullet (so to speak)...when my CAG came back normal I was thrilled. Then saw the MRI...and FRED (Bob came later)...no no chemo or radiation for me...my choice...sort of a Ghandi-esque approach. I keep them calm and stress free...and they haven't killed me (yet) lol... The neurosurgeon who did the dx said 12 months... It has been 3 years now. The ataxia is something to deal with though. I use a cane on long outings but found that it was (in the big picture) causing my gait to be worse with everyday use. Doing a lot of PT to strengthen core muscles and paying attention to my gait...to deliberately not "bounce" because that seems to be what throws me off. Also taking the maximum dose of Antivert which seems to help. But YEAH...I seriously want to get a tee-shirt that says: "Brain Damage- Not Drunk" lol... later, C
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06-03-2010, 03:48 PM
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Junior Member
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It is nice to be with people who really do "understand" Funny, as a nurse I would often hug someone and utter that little platitude about "knowing how you feel"...now I KNOW better... As for the kick in the *** to F&B...I try to avoid pissing them off...lol...we have a nice accord...I don't bombard them with chemicals/radiation...and they don't kill me...lol Later, C 
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| "Thanks for this!" says: | SallyC (06-03-2010) |
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06-03-2010, 03:56 PM
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#16 | ||
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Junior Member
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I'm just hoping that on my next MRI they haven't spawned any new "friends". The Ataxia is sometimes funny/frustrating/scary...and limiting. I used to be very active outdoors. Hiking/climbing and such. Now the back porch step is sometimes an adventure. ~sigh~ Talked to the neurologist about IV ABT Therapy to slow the Paraneoplastic disorder...and it is feasible...but the immune response (they believe) is what has kept the tumors growth in check...so...scratch that... Thanks for the Welcome C |
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06-03-2010, 04:00 PM
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#17 | ||
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Junior Member
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Hi back When they were screening (CAG et al) they also screened for MS with the MRI...that is when they found Fred. (Bob came later) It is nice to talk with others who understand the whole "...no REALLY I am not DRUNK..." thing... Thanks for the warm welcome here! Later, C
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06-03-2010, 04:03 PM
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#18 | ||
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Junior Member
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Not without risking severe (permanent) functional losses. Thanks for the welcome. later, C |
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| "Thanks for this!" says: | ewizabeth (06-04-2010) |
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06-03-2010, 11:06 PM
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#19 | |||
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Elder
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Odd, another nurse with these neuro problems. Why did it pick us?
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06-04-2010, 12:01 AM
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#20 | ||
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Senior Member
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Hi and welcome!
__________________
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion. Anonymous |
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| "Thanks for this!" says: | Carla Hurst (06-05-2010) |
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