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Old 02-24-2012, 06:38 PM #1
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kicker kicker is offline
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Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
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PPMS is Primary Progressive Multiple Sclerosis - for me that has meant progression only, never a remittance. From no one would suspect (me, doctors) to a variety of aids (crutches, walker, etc) to current use of power chair

I think I've hit plateaus twice, I think I am currently in one. My PPMS tends to be very physical - I can't walk, am in a chair - but cognitively seem ok (Other than expected age-related stuff) Everyone is so different - symptoms and approach to MS. (DMDs, diet, nutrition, etc,)

When first diagnosed I read too much and waited for stuff that never happened to me. I believe in being educated and informed but was making myself crazy.
Best to deal with what actually happens.
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PPMS, DXed 2002 Queen of Maryland
Wise Elder no matter what my count is.
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SallyC (02-24-2012)
Old 02-24-2012, 08:54 PM #2
ms er since '06 ms er since '06 is offline
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Everyone is different like Kicker says. Even within your own category (Progressive or RR) people are different. I have never stopped progressing and need to use a cane. I have tried many meds, chemo, botox, PT - some things help, most really don't. We're here to help each other and give each other ideas.
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SallyC (02-24-2012)
Old 02-26-2012, 01:33 PM #3
AstaireGal AstaireGal is offline
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Default Glad I found this place

I'm so pleased that there is a PP/SPMS "mini-site" here, as I have been searching and searching for a place to talk to other PPMSers and had no luck - until now.
Here's my story: had first symptom (partial numbness in right leg) 18 1/2 years ago and within a few days I had partial numbness in both legs and up to mid-torso. I just kept adding symptoms that were fairly mild at first for several years. I went from dr to dr to dr for TEN years and even had spinal surgery (for compression at C4/C5) which did nothing to alleviate any symptoms. I finally SELF-dx in 2003 because I read-up and researched and knew it must be some type of MS, but it still took 3 more drs and 2 more years before I got a neuro to do an LP and a VER (rather than just another MRI) and even he said: "You PROBABLY have PPMS." As you know, this dx is a "negative" one; meaning, you rule out everything else under the sun, do a zillion tests, add up years of symptom history and say "hmmm, we know what it isn't, so I guess it's PPMS." You see, I have NO brain lesions, so every dr was convinced it couldn't be MS. WRONG!
I am now a triplegic, use a power chair full-time and need help with 90% of daily tasks. Thanks for listening!
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