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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. |
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? |
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. |
'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. |
1980
2007 SPMS No DMDs now Did Beta 2 years Cop. for 6, quit it 7/07 No notable differences. |
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. |
diag 2004 spms had ms problems for 20 years pc dr said depression:rolleyes:
rebif 2 years no help,beta same. feel better -w- no meds,just pt scott |
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! |
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.:D And here I is..:cool:
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.:mad: :grouphug: |
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? :rolleyes: |
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... |
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 |
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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Another PPMS
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 |
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!!:D |
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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