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Roll-Call-PPMS and SPMS

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Unread 01-26-2008, 05:45 PM   #1
kicker
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Default Roll-Call-PPMS and SPMS

DXed PPMS 2003 after a year (2002) of being called RR so could at least ttry DMDs. Nothing helped of course. Tried Novantrone - made me throw up and didn't help. On the list to be tested to be in clinical trial for Fingolimod.
Maybe it'll help, maybe not. (slowing progression)

Anyone try Rituxin?? That interests me.
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Unread 01-26-2008, 05:53 PM   #2
CayoKay
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SPMS, checking in.

dx ON - Feb 1988

dx RRMS - July 1993

dx SPMS - December - 2002

not on any DMDs at this time.

used Copaxone for 3 years, and Betaseron for 2.

quit Beta due to liver problems, quit Cop due to moving to jungle.

so, howya doin' Kicka Mom?
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Unread 01-26-2008, 06:05 PM   #3
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SPMS
DX 1987
Betaseron - 3 mos.
Avonex -10 yrs.
Novantrone - 3 infusions
No DMD's now - all neuro offers to me now is Novantrone - the blue goo

OMG it's been a long time.
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Unread 01-26-2008, 07:18 PM   #4
NurseNancy
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'03 RRMS
'07 SPMS

i've been on copaxone and started methotrexate a few months ago.
some days i think i'm a titch better but most days i think i'm the same.

same is good. i'm still mobile and holding my own.
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Unread 01-26-2008, 07:21 PM   #5
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1980
2007 SPMS
No DMDs now
Did Beta 2 years
Cop. for 6, quit it 7/07
No notable differences.
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Unread 01-26-2008, 07:24 PM   #6
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I was diagnosed with PPMS in February, 2003.
I don't take any medication for my MS.
I take Flexeril for my spasms, Neurontin for my pain, and sub-lingual B12 for my B12 deficiency.
I also have a peripheral neuropathy and consequently it is difficult for doctors to figure out what symptoms are attributed to MS and what symptoms are caused by my neuropathy.
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Diagnosed PPMS - February, 2003
Peripheral neuropathy - B12 deficiency
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Unread 01-26-2008, 08:21 PM   #7
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diag 2004 spms had ms problems for 20 years pc dr said depression
rebif 2 years no help,beta same.
feel better -w- no meds,just pt
scott
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Unread 01-26-2008, 08:30 PM   #8
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First sign of illness Feb. 2003(dx`ed with Mono April 2003)

Dx`ed with PPMS around March 2006. Said no to the limited treatment options offered.

Provigil to try and stay awake, Baclofen to stay limber!
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Unread 01-26-2008, 08:50 PM   #9
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DX in 1976...in remission until 1992..DX again RRMS. A few years later I tried Avonex for 7 months and Copaxone for 10 months....progressing right along. Reached SPMS around 2001/02. Progressed myself onto a walker, then scooter. In 2003 I started LDN and immediately stopped progressing. And here I is..

I'm doing Ok. I took Paxil and now Prozac for Anxiety and depression and LDN and that's it. I have a little spasticity and some weakness in legs and arms ( mostly on my left side), no chronic pain...just the usual aches and tingles.

My biggest complaint is that I grew old with this @#$#^ MS and that was not in my plans.

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Unread 01-26-2008, 09:43 PM   #10
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1979....dx'd with RRMS

1993.....2nd REPORTED exacerbation; still RRMS

1996.....Copaxone; stopped after 4 months due to lots of the immediate reactions. Avonex next for 3+ years with a Methotrexate chaser (I was actually on the MTX 6 mos. before starting the Avonex. Glutton for punishment that I am, I tried the Copax AGAIN in 1999 and lasted 11 mos. + 2 more weeks (almost a year) before telling my neuro that I'd rather be dead then take one more shot of that stuff!

Took a rest, but in between resting I tried Novantrone and a couple of Tysabri infusions. I progressed right through it all. Now I'm on Betaseron, but it's making me feel like **** even WITH meds to combat reactions.

I'll see my neuro in about 10 days. We're gonna be having another one of "our talks"

He still writes me as RRMS so I can get meds if I want to try them, but we've discussed it privately and he admitted that I am now progressive. Big surprise, huh?
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