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Old 09-16-2006, 06:21 AM #1
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Default Home Sweet Home!!!

It's really great to be back here among so many familiar names! You all were really missed. I tried a different forum for awhile, but this is where I belong if it's okay with you. Please........

This summer has been a bad one with so much heat, humidity or rain. I was only out of the house three or four times since the legs don't want to cooperate. It's gotten harder to drive because I usually can't get into the car by myself. Does anyone else have the spasticity thing like this?? My legs are so stiff, they won't bend without someone else forcing them, so I can't get in.
Is anyone familiar with Tovaxin? I was reading about it and the success of some who were in trials. Don't know if it's readily available now or not??? I'm desperate -- seem to be going down-hill fast.

Anyway, I'm Home!!!!!!
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Old 09-16-2006, 08:34 AM #2
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I hear ya Judy!
It's mostly my right leg that won't bend.
My husband has to bend my leg so I can
get up the stairs.
Zanaflex doesn't seem to work.

As far as driving I leave that up to my
husband nowadays.

Last edited by vlys; 09-16-2006 at 07:48 PM. Reason: typo
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Old 09-16-2006, 12:43 PM #3
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Hi Judy, Welcome Home. Did you have another username? So many Judys, and I want to know which one you are. Are you MsPL?

Any way spasticity is my constant companion, but not too bad since LDN. I don't take any other meds for it. I do hope you find something that works for you, though.

The heat has a whole lot to do with MS fatigue and all the other nasty MS thingys. I call it a summer flare. Summer used to be so fair and now it's just flare.

Happy to have you home, and I think I know the other forum, of which you speak...lol
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Old 09-16-2006, 01:13 PM #4
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Hi Judy!

Looking forward to getting to know you.

I don't have the stiffness that bad, it sure doesn't sound comfortable Have you tried any meds that may help?

Thankfully here in Colorado we have low humidity but we still get the heat. When we do get higher humidity (which isn't often) it just takes all of whatever energy I have - limp dish rag sums it up
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Old 09-16-2006, 06:19 PM #5
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Hi Judy,

I also have spasticity, which seems to act up more when the weather cools down (now).

I am also on LDN, and it has helped enough that I was able to start a daily exercise/stretching program. That has made a significant difference for me!

Cherie
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Old 09-17-2006, 05:48 AM #6
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Thanks for the replies everyone! Yes Sally, mspl is correct. Actually I added that to my signature but don't know what happened to it when I posted??? Also, why did "Visitor" come up instead of "New Member"?

It sounds like spasticity is a problem with quite a few mser's. A couple years ago I tried Baclofen, but it worked too well! lol I need some of the stiffness to stand up.

I'm also still on LDN, 3.0 mg., but it seems like it isn't doing much lately. Maybe I should try upping the dosage again. It too made the spasticity worse when I tried 4.5 mg starting out. After two years, maybe it would be different? Any thoughts?

Again, thanks everyone and hope you're all having a good weekend..........Judy aka msproperlady
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Old 09-17-2006, 09:37 AM #7
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Quote:
Originally Posted by Judy View Post
I'm also still on LDN, 3.0 mg., but it seems like it isn't doing much lately. Maybe I should try upping the dosage again. It too made the spasticity worse when I tried 4.5 mg starting out. After two years, maybe it would be different? Any thoughts?
I was on 3.0mg for about 6 months before I was finally able to make the move (VERY slowly, .05mg at a time) up to 4.5mg.

When I tried the first time, it was during the change of the seasons, to Fall. The cold weather really affects my spasticity, so I wasn't sure if it was the change in temp or dosage (LDN is known to potentially cause more problems with spasticity, at least in the beginning of upping the dosage). I dropped down to 3.25mg, then went back up over several weeks.

Personally, I would wait till the first of the cold spell is over, then give it a go.

It is really important to try to get exercise though, even just some light stretches like rolling your ankles, etc. Ultimately, I found a rowing machine was perfect (with a relatively strong upper) because it works the legs without needing the strength in them to do any work.

I started out walking the walls, and can now do about 45 mins a night of crunches, push-ups . . . all of the harder ones. My spasticity is mostly under control for the first time in years.

Good luck,

Cherie
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Old 09-17-2006, 03:35 PM #8
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Give it try Judy. I was on 3mg for over 2 yrs and just jumped up to 4.5mg, last year. I'm doing fine/better and no increased spasticity. I tried going up in doseage before and has the stiff legs problem, but this time it worked.

So do it Cheries way or my way or your way, just do it...LOL Let us know how it goes.

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Old 09-18-2006, 05:45 AM #9
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Thanks Cherie and Sally! Isn't it great to come here and know there are people who actually know what we're talking about!!!!! I'm going to call my neuro and ask about titrating up. It's worth a shot.

Judy
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