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Old 12-14-2008, 04:34 PM #21
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Originally Posted by Debbie D View Post
Thanks again for the info and support. Now I'm into crying jags...so upset over everything...
and now my thighs are hurting and weak...worked out Wed-Fri., and now I can't handle pain/weakness. had to sit during part of mass this afternoon...just too weak in the thighs.
I need happy pills!!
If you are anything like me . . . then you need pills to take care of the pain, and A/D's to take care of emotional part ... which causes anxiety, so you need anxiety pills ... which prompts nausea, so you need nausea pills that cause heartburn ... and so on, and so on.

That's one big reason I rarely take anything.

Cherie
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Old 12-14-2008, 05:36 PM #22
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Originally Posted by Debbie D View Post
Kay, how do you know when you go from RRMS to SPMS?
well, there's no clear demarkation... no border that is crossed, so it's usually hard to tell.

the way it was explained to me was "rearview mirror diagnosis"

I used to have relapses like clockwork, one or two a year, with obvious new symptoms, but as the years rolled past, there was less and less "full remission" and more and more pile-up of "residual deficits"

particular symptoms began lasting for years, and not remitting, or only partially remitting, and instead of *weeks* (like I remember flares lasting back in the late '80s) flares may resolve very slowly, taking months to settle down into the "new normal" (naturally, your mileage may vary... )

for me, the 2002 flare which involved my right side, only halfway went away, leaving my right hand feeling like I'm wearing a thick glove, .

the neuro said that eventually, there's less and less room to rebuild neural-signal pathways AROUND the damaged area of the myelin sheath.

but remember, I've had MS for almost 21 years now, so this was fully expected, and calmly planned for.

here's the brutally blunt numbers and percentages:

After 5–15 years of relapses and recovery, the relapses start to dwindle in frequency, and disease symptoms worsen during and between attacks. These changes may take months or even years to notice, and then only in hindsight. No tests or imaging studies can absolutely confirm the onset of SPMS, but a diagnosis is generally based on the history of worsening MS over the course of a year in a patient who previously had clear relapses and recoveries. About 50% of individuals who begin with RRMS have SPMS within 10 years, and 90% within 25 years.

http://www.neura.net/channels/1.asp?...e=&cps=0&cpp=0

I remember being very unhappy with hearing this answer back in 1994, because it's so vague and uncertain, and what I *wanted* was certainty and clarity...

my neuro told me... "Well, my dear" (he was an elderly gentleman, so I let him get away with THAT, lol!) "There IS no clarity in life, just go ahead and do what you CAN, and live your life the best you can..."

so, I followed his advice, and most days are full of good, if I *LOOK* for it, and *FOCUS* on it, instead of getting bogged down in carp.

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Old 12-14-2008, 05:59 PM #23
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I agree legs its the MS and all the meds, i give a whole new meaning to the letters P M S

Deb I hope you become less of a...... lol (just razzin you) I hope you feel better real soon
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Last edited by weegot5kiz; 12-14-2008 at 06:37 PM.
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Old 12-14-2008, 06:07 PM #24
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Thats how it was explained to me too Kay. This is why its real important for the doc to know what is happening with your ms SX MEDS NEW OLD and keep a journal so you dont forget to mention these facts to the doctor. My doc explained to me how vital it was to keep him i the loop so he can if needed look back and look at now to make that decision, he agrees I seem to of slowed a bit, but is also worried cause I am hovering pretty close to SPMS DX, too many new SX stick around and are getting worse still with no Exasperation(sp?) couldnt they pick an easier word:SMACK:

hope your week goes well Deb
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History doesn't repeat itself, but it does rhyme.............................Mark Twain



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Old 12-14-2008, 10:32 PM #25
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Thanks so much, Kay and Frank...
So, I see the neuro on Tues. I'm trying to think of how to notate my sxs and such since he put me on IVSM and pred and Copaxone on 11/18...
do I notate how my sxs dissipated, and then came back once oral pred was discontinued? Do I notate the lumps/pain after injecting Copaxone?
Do I notate the new thigh pain/weakness? It's difficult to know what to notate. There's the old sxs returning now that the oral steroids are almost 2 wks gone, and also the emotional lability. I feel so confused as to what's going on in my body/mind, esp since I'm on meds for depression/neuropathic pain. So what is new? what is old and returning? how do I notate all of this? I sincerely don't want to seem like a hypochondriac...since I have spent months since March denying that the sxs are increasing...
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