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Old 02-10-2010, 12:17 PM #51
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I am also surprised by not seeing men posting.

As far as MS, I have no control of how the disease is going to affect me. I can only control my reaction to what is happening.

I have developed incontinence. I wear a "pee" pad. Not crazy about it but if I have a need, there are drugs to take if I am going on a long distance trip with no bathrooms. A road trip...but I prefer to fly and DH has flight/hotel points we use when we go away.

Dx'ed in 2005 with PPMS. I probably had sx's in my 40's.

I started using a walker over a year ago. Got over being self conscious about it. Makes people very nice, wanting to help. I let them help because I know that I felt good when I helped someone.

As for researching the internet, I let everyone here do that for me. (Yes, I am lazy about it!) There are a lot greater brains here than any work I may try to do on my own.
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Old 02-10-2010, 02:55 PM #52
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Just make sure you bring notes of what's been going on...and remember to write down what the doc says...I always bring DH with me, since I forget what he tells me. Last time my doc wrote down all that he wanted me to do so I wouldn't have to. Only thing is, I never took doctor writing hand translation classes in school

just thing of one thing: what do you want to learn from your doc during your appt? This will guide the questions you ask...
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Old 02-10-2010, 06:33 PM #53
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Awesome Idea Debbie! I was so "deer in the headlights" during my meeting, that I forgot half my questions, even the simple ones, and walked away going "what did he say?!"

Take a simple list of your top ten questions. Include your incontinence question.

Take enough paper to write down his replies, and if he is getting ahead of you, ask for the pamphlets that come with the disease. His nurse should have a boat load of stuff you can take home.

Also ALL of the injectable drugs have their PR kits that have note books, book bags, and literature in them. Take a few home. Take them all home! enjoy the freebies!

Dont panic about which drug to chose. Have a frank discussion about it with the MD and get his assurance that if you feel this med is horrible, he will take you off it. Place you onto another choice. Many of us started on one drug, and landed on another. Some of do beautiful on Betaseron, and others of us didnt fair so well. You wont know where YOU land till YOU use it. We will be here to cheerlead you.
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Old 02-10-2010, 07:04 PM #54
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I still have the nice Copaxone bag that my neuro gave me. My netbook fits in it. The binder makes a nice place to store crochet patterns. (I threw out all the documentation over the summer after I quit the C)

I gave my mom the pen and the calendar back when I first got that bag. She likes pens, and really likes free calendars.

My dad used to get a lot of freebies from the drug reps at the hospital he works at. We've got a zillion ballpoint pens with the names of medications on them.

When I was in school, I could always identify my pens when someone stole them from me because I knew the drug name written on the pens and how to pronounce it.
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Old 02-10-2010, 11:15 PM #55
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Quote:
Originally Posted by SallyC View Post
We used to have lots of men in here. Where did you disappear"? Probably Facebook or some other dirty place . Frank, Moose, Larry, Harry, Gene, Tom.............I'm forgetting many????

I actually asked this yesterday and hope that some guys would tune in here and I would like to talk about how it is going with them.
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Old 02-10-2010, 11:32 PM #56
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Quote:
Originally Posted by Debbie D View Post
Just make sure you bring notes of what's been going on...and remember to write down what the doc says...I always bring DH with me, since I forget what he tells me. Last time my doc wrote down all that he wanted me to do so I wouldn't have to. Only thing is, I never took doctor writing hand translation classes in school

just thing of one thing: what do you want to learn from your doc during your appt? This will guide the questions you ask...

Gahhhh I'm not big on preparation for these things. I don't do much when I am under anticipation and nervousness. I'm more about...put my shoes on, walk in with my hands in my pocket and just getting it over with. I have some basic things I'l remember to ask and yes.... the continence thing... If I can do something now that will resist "that" I will be sure to do it.
I'll bring a small notebook with me, but mostly my cousin will do the writing...I'll be all nervous and shaky to do that so she won't mind.

I guess my biggest worry(always has to be one) is really bad news.... I mean what if he says it's bad?... What if he says don't even think about remissions or recovery...... I do know they probably won't be able to tell right now, but you know what?....I don't want to know.

Thanks kindly to you all. You have made me a little less nervous and tomorrow I'll be getting this over with. It is what it is and I will do it like all of you do and I am glad you all are here to support. I hope as we become better friends that I get a chance to meet some of you in real life.

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Old 02-11-2010, 09:55 AM #57
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Thinking of this appt. as "getting it over with" won't get you the kind of info you need if this is indeed MS...this is the beginning of your journey with this doctor as your teammate...and you are a teammate also.

You are a consumer purchasing health care...to be informed is to be empowered. I am NEVER afraid or stressed when I see this neuro, because he spends all the time I need answering questions and checking me to see how I'm doing. I feel as if we, with my DH, are a great team in this journey.

I hope that you help your doctor by explaining your symptoms, your concerns, and asking the questions you need answers to. That is why it is so important to go in with them written down-some of us draw a blank, as Dej said, and if you can look at a paper with your questions listed, then you won't have to stress out about not getting them answered.

Good luck! Let us know how it goes...and no matter what, keep checking in here...it's been a Godsend on my journey...these people are the best!
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Old 02-11-2010, 11:30 AM #58
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Quote:
Originally Posted by Kitty View Post
TXBatman still posts quite a bit. Marcstck (wheelchair kamikaze) comes on every now and then. freeinhou (Tom) still posts fairly often. You're right, though, there used to be more.
And Bill/nakita has been here a lot recently..
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Old 02-11-2010, 11:31 AM #59
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Tom's posted some funny stuff on the "Shower" thread B2Y started.
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Old 02-11-2010, 12:53 PM #60
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Mike (Putterfit) is around a little after a long absence. No PJames though. I see some on Facebook.
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