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Roll-Call-PPMS and SPMS

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Old 01-27-2008, 12:53 AM #11
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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 #12
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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 01-27-2008, 01:39 AM #13
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Dx'd PPMS..Nearly a year of Rebif, was more sick from that than MS so I quit. Copaxone for 2 years before I quit this past summer. Now, just LDN and Provigil..
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Old 01-28-2008, 10:04 PM #14
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Hi all

I am also PPMS person Diagnosed with MS in July 2001 - downhill from there...was classified PPMS within a year. As a side note, was also diagnosed with cancer - Multiple Myeloma within 2 weeks of my MS diagnosis

On Baclofen for spasms, oxycontin for pain (mostly for Multiple myeloma) though it helps with overall pain. I have been on and off Neurontin - up to 1800 MG.

Am interested in trying LDN - researching that now. As I am about to change neurologists - am anxious to see what the new doctor will offer, if anything.

Hope we can get a PPMS/SPMS area here, as I truly believe our concerns are different from those with RRMS.

Thanks!
Mo
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Old 01-29-2008, 10:03 AM #15
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Mo,
PPMSers and SPMSers are different. Until it could be s sub-forum we can put PPMS/SPMS in thread subjects and share what little information available. (usually not much and everyone so different from each other.)

Tried Novantron a few times. Made me sick and kids disappointed I didn't pee blue!!
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Old 01-29-2008, 01:42 PM #16
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My Craig is a SPMSer...and I am his fulltime caregiver...I just wanted to add us to the roll call...we just keep on keepin on...
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