rr vs spms and ppms
Can you have spms from the beginning or do you always start out with rrms. i always assumed that spms came later and by the time your neuro told you that your ms was now spms you were well on your way in the disability department and the lenth of time your ms has been diagnosed.i guess what i am trying to say is you can be slightly affected as far as dissability and still be considered spms.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
People with SPMS usually start out with RRMS and then proceed to the progressive form later.
My experience was that I was RRMS for about 15 years at which time I would have relapses and then get better. At no time did I fully recover between bouts. Now I have been SPMS for over 21 years and do not get a lot worse unless I have a cold or the flu. Instead of relapsing, I just keep going slowly downhill.
The PPMS types do not have remissions, instead they go continually downhill from the beginning. I believe the secondary progressive classification is for people who started out having remissions and no longer have them.
gwa
My experience was that I was RRMS for about 15 years at which time I would have relapses and then get better. At no time did I fully recover between bouts. Now I have been SPMS for over 21 years and do not get a lot worse unless I have a cold or the flu. Instead of relapsing, I just keep going slowly downhill.
The PPMS types do not have remissions, instead they go continually downhill from the beginning. I believe the secondary progressive classification is for people who started out having remissions and no longer have them.
gwa
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Hey Rob...
Nice to see your name pop up (have you seen what you started at the pics thread? It's like national geographic over there!) Is it thawing up in your beautiful neck of the woods?
Jeff's neuro admitted she didn't know what the hell kind of MS he had. Neuros really can't be 100% sure when they diagnose. She picked copaxone because men presenting with Jeff's symptoms (numbness, tingling, balance and bladder issues) did well on that drug. Her advice was "don't put anything off for tomorrow," which kind of scared us, but she was right. She told us the only real markers they have for primary progressive is if most of the lesions show up in the spinal column and there's a lack of inflammation, and constant increase in disability. The lumbar puncture results are different for PP, too. RR shows up mainly in the brain, and is marked by inflammation and remission. But that's not always true. She also said Jeff could have had MS for 20 years or three months. yikes.
Then there are people who go downhill fast, only to have remarkable healing thru antibiotics or diet.
Here's a guy I was reading about today from Nick's post- Roger McDougall-
http://www.direct-ms.org/rogermcdougall.html
I dunno if any of this answers your questions, but nice to hear from you-
AC
Nice to see your name pop up (have you seen what you started at the pics thread? It's like national geographic over there!) Is it thawing up in your beautiful neck of the woods?
Jeff's neuro admitted she didn't know what the hell kind of MS he had. Neuros really can't be 100% sure when they diagnose. She picked copaxone because men presenting with Jeff's symptoms (numbness, tingling, balance and bladder issues) did well on that drug. Her advice was "don't put anything off for tomorrow," which kind of scared us, but she was right. She told us the only real markers they have for primary progressive is if most of the lesions show up in the spinal column and there's a lack of inflammation, and constant increase in disability. The lumbar puncture results are different for PP, too. RR shows up mainly in the brain, and is marked by inflammation and remission. But that's not always true. She also said Jeff could have had MS for 20 years or three months. yikes.
Then there are people who go downhill fast, only to have remarkable healing thru antibiotics or diet.
Here's a guy I was reading about today from Nick's post- Roger McDougall-
http://www.direct-ms.org/rogermcdougall.html
I dunno if any of this answers your questions, but nice to hear from you-
AC
Last edited by cheerleader on Mon May 05, 2008 3:11 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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It makes me wonder if all of our immune systems don't, at some time or other, mistakenly 'screw' with our myelin. Maybe in us MS'ers it doesn't realize the job is done and just keeps going. There may be many things that our immune systems do that is "good", but may have some slight neuro degenerative consequences and with us it isn't slight.
You know how some people can eat until they are full and just stop and others can't. There are widely varying degrees of skinny to fat. Maybe our immune systems get stuck in some sort of viscious cycle while normal people just get the small amount of collateral damage (not enough to stand up and take notice) before their immune system quits.
I guess what I'm saying (rather poorly upon proofread) is that it's possilbe that everyone's immune system does some damage to their CNS, ours just doesn't know when to quit. Kind of like the prostate cancer thing. I've heard that if men could live to be 150 or so that we would all die of prostate cancer. It's just in some it happens before the rest of old age puts us down.
I'm sorry if that came off all discumbobulated, but I have a nasty head cold and that is when I definintely have that symptom where I can't find the right words. Hell, I can't even find THAT word right now .
You know how some people can eat until they are full and just stop and others can't. There are widely varying degrees of skinny to fat. Maybe our immune systems get stuck in some sort of viscious cycle while normal people just get the small amount of collateral damage (not enough to stand up and take notice) before their immune system quits.
I guess what I'm saying (rather poorly upon proofread) is that it's possilbe that everyone's immune system does some damage to their CNS, ours just doesn't know when to quit. Kind of like the prostate cancer thing. I've heard that if men could live to be 150 or so that we would all die of prostate cancer. It's just in some it happens before the rest of old age puts us down.
I'm sorry if that came off all discumbobulated, but I have a nasty head cold and that is when I definintely have that symptom where I can't find the right words. Hell, I can't even find THAT word right now .
Immune suppressant drugs are mostly to treat rrms and this is because ?when your having a bad attack the immune system must be in overdrive compared to someone with spms who say it is just slowly getting worse. This persons immune system must be relativity calm almost like the person with rrms but is in remission or is this wrong to say? The crabs help prevent relapses in these people, what is the difference drug wise between the two. Crabs would have to work to some extent even on spms wouldn’t they?does the mechanics of the immune system change from rr to sp? What is it that changes is it the amount of something? What causes more lesions to form on the spinal cord rather than the brain?
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
Lyon,
I just noticed it today. Sure hope he is on the right track. His research makes a lot of sense and it would be great if he is correct.
A lot of the reasons that we all have varying symptoms and disabilities is made clear with his presentation. I need to go back to Stanford researcher, Dr Steinman, and reread some of his publications and theories and see if they are similar because proteins are involved in both discussions.
gwa
I just noticed it today. Sure hope he is on the right track. His research makes a lot of sense and it would be great if he is correct.
A lot of the reasons that we all have varying symptoms and disabilities is made clear with his presentation. I need to go back to Stanford researcher, Dr Steinman, and reread some of his publications and theories and see if they are similar because proteins are involved in both discussions.
gwa
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