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Old 01-26-2008, 06:05 PM #1
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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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Old 01-26-2008, 07:18 PM #2
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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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Old 01-26-2008, 07:24 PM #3
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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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Old 01-26-2008, 08:21 PM #4
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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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Old 01-26-2008, 08:50 PM #5
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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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Old 01-26-2008, 09:43 PM #6
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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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Old 01-27-2008, 12:53 AM #7
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Diagnosed PPMS in May 2003.

Have tried Ribif , intrathecal methotrexate, Tysabri, and plasmapheresis, all to no avail. My disease continues to progress, my right arm and leg are useless, and my left arm and leg are going in that direction as well. This is one hell of a disease...

My doctor is now suggesting intrathecal (spinal) injections of steroids, or possibly Rituxan. At this point, I'd inject gasoline if I thought it would help...
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Old 01-27-2008, 01:31 AM #8
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1978 - first obvious symptoms
May, 1991 - Probable "Benign RRMS"; paralyzed
May, 2003 - RRMS; second paralysis attack
Jan, 2005 - SPMS; still relapsing, but upgraded because of continuous progression over two yr period
May, 2005 - Started on LDN, which was my first and only medication
Feb, 2006 - oops . . . RRMS again; downgraded due to sustantial improvements
2008 - still RRMS and no further progression

So I guess I can't post on these roll-call threads any more . . . for now.

Cherie
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Old 01-26-2008, 08:30 PM #9
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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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