When do I know it's time to declare Remission?

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When do I know it's time to declare Remission?

Postby mattalleng » Thu Oct 14, 2010 8:32 am

So Im wondering, how do I know if I am in remission or not? I am doing much much better, I still have some symptoms left but for the most part I am living an active life once again, but when should I declare remission? How do people usually gauge that and put a date to it you know?
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Postby msmything » Fri Oct 15, 2010 1:51 pm

Mattaleng, I have the same issue.
I think part of the problem is that realpses seem to be fairly speedy, where as the 'recovery' from relapse seems to be SOOOOOO gradual.

Then you add in the fact that you don't know if the symptoms you continue to feel are just going to be your baseline from now on or not.

I don't know that given the nature of the disease that there really is an easy answer. It's not as if most of us have awakened in the morning thinking I feel GREAT today in a long time. I don't mean that to sound gloom and doom. Life will be worth living until the last breath. I with ya, MS doesn't have me either!
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Postby mattalleng » Fri Oct 15, 2010 2:35 pm

msmything wrote:Mattaleng, I have the same issue.
I think part of the problem is that realpses seem to be fairly speedy, where as the 'recovery' from relapse seems to be SOOOOOO gradual.

Then you add in the fact that you don't know if the symptoms you continue to feel are just going to be your baseline from now on or not.

I don't know that given the nature of the disease that there really is an easy answer. It's not as if most of us have awakened in the morning thinking I feel GREAT today in a long time. I don't mean that to sound gloom and doom. Life will be worth living until the last breath. I with ya, MS doesn't have me either!


No need to feel like you sound gloom & doom, I totally agree, its just annoying because I feel about 90% right now, I run a blog and would like to do an over the top, over dramatic, humerus video announcement of my recovery but I'm not sure if its too soon or not because the symptoms i do still have left over could either be here for keeps or still disappear lol so yeeeeeeah idk, guess ill give it another week or something.
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Postby scorpion » Fri Oct 15, 2010 4:28 pm

When I had my first relapse it came in the form of a nasty vertigo. The worst of the vertigo went away in about three weeks but for about four months I felt like I was walking on ground that was crooked. One day bam,the feeling was gone and although I still feel off balance at times it is NOTHING like it was for four months after my relapse. Go figure.
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Postby mattalleng » Fri Oct 15, 2010 4:34 pm

scorpion wrote:When I had my first relapse it came in the form of a nasty vertigo. The worst of the vertigo went away in about three weeks but for about four months I felt like I was walking on ground that was crooked. One day bam,the feeling was gone and although I still feel off balance at times it is NOTHING like it was for four months after my relapse. Go figure.


So what do you typically say when people ask you when you went into remission?
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Postby scorpion » Fri Oct 15, 2010 4:48 pm

mattalleng wrote:
scorpion wrote:When I had my first relapse it came in the form of a nasty vertigo. The worst of the vertigo went away in about three weeks but for about four months I felt like I was walking on ground that was crooked. One day bam,the feeling was gone and although I still feel off balance at times it is NOTHING like it was for four months after my relapse. Go figure.


So what do you typically say when people ask you when you went into remission?


I would probably say after three weeks because that is when I started to feel better. Clinically, you got me?
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Postby mattalleng » Fri Oct 15, 2010 4:52 pm

yeah, I got you, so you dont really have an "official date for yourself Im guessing? lol. I know this is probably really dumb, Im doing better, im doing great and thats whats important but for the sake of me being who I am, I want to give myself a date lol...
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Postby tara97 » Fri Oct 15, 2010 9:47 pm

I dont think I have ever truly been in remission. I now know I have had this illness since birth but I have been at a point off and on where I did not notice it because I seemed to be locked into homeostasis. now in stasis all I get during relapses is that knife like pain on the bottoms of my feet. this is as good as it gets. this illness is all about stasis/ crisis occilating as your body is trying its best to normalize. one can only hope that our kidneys and liver hold out for this.
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Postby mattalleng » Sat Oct 16, 2010 7:47 am

tara97 wrote:I dont think I have ever truly been in remission. I now know I have had this illness since birth but I have been at a point off and on where I did not notice it because I seemed to be locked into homeostasis. now in stasis all I get during relapses is that knife like pain on the bottoms of my feet. this is as good as it gets. this illness is all about stasis/ crisis occilating as your body is trying its best to normalize. one can only hope that our kidneys and liver hold out for this.


Hmm... I don't seam to have it as bad as you.... And I hope that doesn't sound blunt/rude or anything, I'm just saying, from my current experience, I have gone from about 30% (at the worst of my exacerbation) to about 90%. Im not sure if I'll ever make it to 100% but I am at least at a point where I could be satisfied living like this you know? Its not really getting in the way of life anymore....
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Postby msmything » Sat Oct 16, 2010 9:32 am

How long ago were you diagnosed Mattaleng?

And Tara, why liver and kidneys, the drugs we take?
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Postby mattalleng » Sat Oct 16, 2010 11:49 am

msmything wrote:How long ago were you diagnosed Mattaleng?

And Tara, why liver and kidneys, the drugs we take?


My first exacerbation started August 1 of 2010 and I was diagnosed maybe three weeks after? I can't remember the exact date.
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Postby msmything » Sat Oct 16, 2010 2:19 pm

I like hat you can't remember exact dates, i think some folks have a date engraved in their memories...it's not a positive thing to dwell on me thinks.
That has to be a record time for diagnosis though. what were your symtoms?
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Postby mattalleng » Sat Oct 16, 2010 3:05 pm

msmything wrote:I like hat you can't remember exact dates, i think some folks have a date engraved in their memories...it's not a positive thing to dwell on me thinks.
That has to be a record time for diagnosis though. what were your symtoms?


Lol I can't remember because my short term memory is SHOT lol. Click this link to read my blog article on how my symptoms started, scroll all the way down for a plain ol' list:

http://mattsms.blogspot.com/2010/09/mat ... to-my.html
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Postby tara97 » Sat Oct 16, 2010 4:59 pm

kydneys and liver because the scars on the brain have very little to do with the whole process of this illness. my hypothesis (and we all know that MSers are all about trying to come up with the theory that makes more sense that a rogue immune system one) is that MS is really porphyria. the first few porphyria hits appear acute and we normalize after a few weeks then after so many porphyria attacks which elelvate cortisol and cause the dumping of potassium, magnesium and cloride a loss of pH starts to occur. somehow the urea cycle is disrupted causing low uric acid high nitrogen and then our bodies become bacterial thus the high folate and high platelets. also fungus anyone?. nitrogen if it is not turned to uric acid will also turn to amonia which is toxic. anyone smell amonia how about pungent armpits. then if we hit cortisol exhaustion, this is why the hypoglycemia, low blood pressure and low temperature, loss of control of immune system. in the absence of cortisol a hormonal cascade effect will occur. because we are talking about a loss of electrolyte homeostasis vitamin D would be key to this also as calcium is an electrolyte. cortisol is very important to the alkalizing and normalizing of the body after crisis.
lupus is high uric acid
low folate
low platelets
I believe it is the same disease different manifestation
just a wild theory but it certainly explains alot
liver and kidneys have alot to do with perging and normalizing the body but cleaning up this mess is a tall order for them so take good care of them
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Postby msmything » Sat Oct 16, 2010 8:56 pm

Wow, I have none of those things, I never even wear deoderant.

My electrolytes are normal, just had a chem 25, not a thing out of line. My cortisol level is darn near normal, as normal as it gets when you've been on oral for 17 years, i"m producing about 3mg /day biologically. I have normal sugar...but ridiculously high blood pressure considering how much I swim, and care for my diet.

Like you said, we're all different, with different theories. I'm all about the scars...see um, feel um, hate um.
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