Question?

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Question?

Postby robbie » Wed Feb 06, 2008 10:10 am

I was just wondering what is happening when one day out of the blue you just feel better. You can notice that you can lift your feet a little of the rug you can pull your knees up in bed you can stand a little longer your head feels clearer you just feel more human. This is with no drugs and no difference in the daily routine. This feeling then passes and it’s back to the same old feeling like shit.
When this happens is the ms just taking the day off, how can this be? What is happening in my brain or immune system that allows these noticeable changes to happen?
I know that good days and bad days are common but why? Eventually I guess the good days just stop but when they happen they sure do tease you into thinking that you must have done something right.
Had ms for over 19 years now.
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Postby SarahLonglands » Wed Feb 06, 2008 10:57 am

I guess it shows that feeling like that is still possible, Robbie. When I started abx, I had some days when I felt amazingly better, but as with you, it didn't last until one day it did. I was working on the theory that if you are still capable of doing something, eventually some wires will click and you will be able to do that all the time.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby gwa » Wed Feb 06, 2008 11:10 am

robbie,

Are you still taking the minocycline?

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Postby robbie » Wed Feb 06, 2008 12:30 pm

No gwa i am not taking anything anymore, that was part of the point i still can feel this way with nothing to attribute it to. I just wonder what reasons or mechanisms of ms can allow this to happen. Why?
Had ms for over 19 years now.
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Postby gwa » Wed Feb 06, 2008 3:35 pm

I was just curious because I don't ever feel really good, just not so tired all the time. My main problems, balance and leg weaknesses never get better.

Guess we just have to keep plodding along.

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Postby robbie » Wed Feb 06, 2008 4:22 pm

Just looking for a reason.
Had ms for over 19 years now.
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Postby Loobie » Wed Feb 06, 2008 4:46 pm

I get that way sometimes also. As my ability to run was declining, there was one day where I was doing my much reduced half mile course and I felt great and did it twice without stopping. Up to that point, it was taking all I had to try and not fall and to barely get done, and then feel like someone hit me with a car upon finishing. So I tried to recreate everything I did the day before. I tried to eat the same, go to bed at the same time, everything I could think of. Guess what? I felt absolutely awful for the next couple of weeks. That is when I decided that it just happens.

Now I'm not running at all. I felt good enough a few weeks ago to do it for a couple of days, but the third day I tried I only made it about 100 yards or so before my legs would hardly hold me up. I asked my doctor about this since I thought maybe I was having lots of little relapses and he said there is no explanation that he knows of for this phenomenon. He did say, however, that he pretty much hears it across the board. Probably just one of the shitty things about MS that we'll never really know.
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Postby robbie » Thu Feb 07, 2008 7:24 am

I know when the ms is with me and then there are single days (not very often) that i can tell i am free of it and then it's right back with avengence. I just thought since this seems to be so commom when you get to a certain stage that one of the experts here might no why but like you say Loobie it may just be another mystery. Jesus man is there nothing they know for sure!
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Postby gwa » Thu Feb 07, 2008 8:54 am

robbie,

You describe yourself as a "7", which to me means that you are using a walker and wheelchair to motivate around the house and that your legs do not work properly.

So when you say that you think that you are sometimes free of MS, what does that mean? Are you walking better and not using your walker or is your mind just clearer?

I am having trouble understanding just how much better you get on your freedom days. Are you going from a "7" to a "1" and if so, for how long?

Maybe you ought to sign up to be a lab rat somewhere if you really get better every now and then so someone can figure out why you are getting better on your own.

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Postby robbie » Thu Feb 07, 2008 9:10 am

I am not sure how to expain it, i am never without the walker or chair.
From my first post
You can notice that you can lift your feet a little of the rug you can pull your knees up in bed you can stand a little longer your head feels clearer you just feel more human. This is with no drugs and no difference in the daily routine. This feeling then passes and it’s back to the same old feeling like shit.
When i say free of ms i just mean that i know it's not activly hurting me at that particular moment, when things are normal i just know that it's(ms) is doing things to me that are not good where as on a day like i describe i know the ms is not in attack mode.
I know this must sound crazy but it's somthing i've noticed over the last few years.I don't get any better as far as the EDSS it's just a feeling.
Had ms for over 19 years now.
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Postby Lyon » Thu Feb 07, 2008 1:53 pm

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Postby robbie » Thu Feb 07, 2008 2:19 pm

Thanks Bob, so the immune system is constantly on the attack but for some reason it lets off at a certain time and allows me to notice these things.When i said that i had no change in my daily routine, the night before i had maybe 3 hours sleep some drinks and some mj. The next day i hurt all day but after a good sleep that night it was the next day that i noticed this. I have noticed these feelings quite a few times over the last few years,but never really watched close enough to see if there was a common cause.
Maybe there is way to bait the immune system into this behaviour, with pregnancy the immune system must relax and thats why it's good for women for the time there pregnant
When something new comes into the body the immune system goes after it right? so could there be something that distracts it from the ms process and has it concentrate on killing something else. Just give it something else to do other than distroy what we need.
Thx again Bob
Had ms for over 19 years now.
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Postby Lyon » Thu Feb 07, 2008 2:44 pm

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Postby Terry » Thu Feb 07, 2008 3:48 pm

Maybe you were catching a cold or some other bug. Don't they say that pp with MS do not have colds, flu, etc as much as the general population? Maybe we go into attack mode against that instead of against ourselves. Just a thought.
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Postby Lars » Fri Feb 08, 2008 8:06 am

Terry,
I think that is an interesting point. I keep telling my wife that when I have have a traditional illness i.e. cold, flu, etc. My MS seems better. I have come up with this COMPLETELY un-scientific belief that your immune system has something else to worry about for a while. Then again it may go back to the power of belief.
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