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Old 01-21-2008, 02:56 PM #1
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Default How Is Your MS ,et al, Treating You Today.

As Curious said, this is about MS and she, as well as all of us know that laughter is the best medicine. Doc John doesn't want to stop that here. We can still joke around about our plight but, sometimes we need help, sympathy, a shoulder, info, expertise and other kinds of support.

So I'll be first. I'm OK today. My MS is not acting up too much lately....just kind of a permanent burr in you butt..KWIM? I am soooo glad the holidays and Kids Birthdays (3 in Jan.....4, if you count mine) are OVER!!! I am soooooo exhausted. Next year I'm taking a cruise to someplace else....any takers??

I'm not on a DMD, unless you count LDN, my hit of choice and I feel for those of you shooting up and infusing and all that other uncomfortable stuff. I did Avonex and Copaxone and steroids, but no more for me..TYVM. I'm SPMS and holding steady for now, except in age, of course.....I am officially now Older than Dirt (OTD)

OK, I know some of you are suffering right now so let the rest of us support you, in some small way.

Next..
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Old 01-21-2008, 03:12 PM #2
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I will go next! I feel that Rebif has run its course for me and that it might be time to move on to something else. (5+ years on the stuff) And...these headaches. I am on these drugs so I don't get headaches and 'Hello'! Not working. So I guess I should go to the Dr. huh?

I'm done complaining for the day. (passes the whine bottle to.......)
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Old 01-21-2008, 03:21 PM #3
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Ok I will go next.

I have RRMS and have been on Copaxone for almost a year! I was shooting Avonex before that but it was not working for me.

I have a lot of spasicity which causes me pain and discomfort.

I am a wallwalker unless I am out in public and then I use a 3 wheel walker.

I have had 2 exacerbations this past year and hoping that things will settle down for me
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Old 01-21-2008, 03:35 PM #4
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Ok I will go next.

I have RRMS and have been on Copaxone for almost a year! I was shooting Avonex before that but it was not working for me.

I have a lot of spasicity which causes me pain and discomfort.

I am a wallwalker unless I am out in public and then I use a 3 wheel walker.

I have had 2 exacerbations this past year and hoping that things will settle down for me
Hi Beth. Do you take any extra Magnesium? Some people swear that it helps with the spasticity. Let me know it that helps you.
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Old 01-21-2008, 04:42 PM #5
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Hi Beth. Do you take any extra Magnesium? Some people swear that it helps with the spasticity. Let me know it that helps you.
Wow Sally I never thought about Magnesium. I will try it. I have suffered sometimes severely with spasticity for a year or so now. I'll let you know if it works. Thank you
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Old 01-21-2008, 04:56 PM #6
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SalllyC - WOW, 4 birthdays in a month! And right after Christmas too. Bless your heart, you must be exhausted. Thanks for the magnesium tip for spasticity. I might give it a try as I really am trying to keep the drugs I take to a bare minimum.

Taffy - Thank you for passing the "whine" bottle. *taking swig, getting nerve up to complain. lol* What will you try next? You really did not have a good time with the DMD's did you. Have you tried increasing your Omega's? It really does help.

Barb - My little friend. I am sorry you are not doing any better. Have you called your neuro?

Bannet (Beth) - Boo on the spasticity. I too don't like it much. It is now a constant in my life. I do do a lot of stretching exercises and have added resistance bands to my morning routine. So far it has been working for me.

Greta - OUCH!!! That sounds like it hurts. That would be the only time I wish my foot and leg to be numb. (Except when I use the epilator. Tried that once and it worked well on my numb leg. LOL).

OK - I've had a few swigs of Taffy's "whine" so . . . .My eye is killing me and has been for a few days. I really don't know if it is sinus related or MS related. It almost feels as though it is throbbing deep in my eye.

Ok, next?
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Old 01-21-2008, 03:28 PM #7
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((((((Taffy)))))) I would say 5 yrs is a pretty good trial run. Something else may just do the trick. What does Doc say, besides Duhhhh?

I'm surprised you've put up with headaches this long...not funny. I think our Neuros sometimes scare us into thinking, that if stop our DMD, our MS will take off like a runaway freight train. Not true except I have heard that stopping Tysabri may have that effect.

Grab your Doc by the **** collar and demand something new better and different. Let us now how that goes.

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Old 01-21-2008, 03:36 PM #8
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Originally Posted by Taffy View Post
I will go next! I feel that Rebif has run its course for me and that it might be time to move on to something else. (5+ years on the stuff) And...these headaches. I am on these drugs so I don't get headaches and 'Hello'! Not working. So I guess I should go to the Dr. huh?

I'm done complaining for the day. (passes the whine bottle to.......)
Hey Taffy...how much Topamax are you taking? Maybe you need to up the dose?

400 mg a day is my dose. I tried 375 and immediately got a headache! Back up to 400! 450 was too much...didn't like the side effects!

Yeah, maybe you SHOULD call the doc!!!

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Old 01-21-2008, 03:52 PM #9
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Sorry about your pain and all your trouble with Meds., Barb. I hope that you are able to stay on Tysabri, since it seems to be helping you.

You might try a little extra magnesium too, for the spasticity??

Let us know how your next Ty infusion goes and the best of luck..
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Old 01-21-2008, 03:59 PM #10
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Good idea sally!
MS-wise, I'm still going well, it's my darn achilles tendon again. I think I walked too hard last Wed and managed to hurt it again and now it's stiff when I walk. It took forever to heal last time, and I'm impatient. I started walking again yesterday and after it warmed up, it was ok, but I'm not back up to ramming speed yet.
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