rr vs spms and ppms

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Postby robbie » Mon May 05, 2008 12:46 pm

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 over 19 years now.
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Postby gwa » Mon May 05, 2008 1:08 pm

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.

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Postby Lyon » Mon May 05, 2008 1:09 pm

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Postby robbie » Mon May 05, 2008 2:07 pm

so Bob can you have mild forms of all these, it must be fairly important as to what kind the neuro says you have because most of the crabs are givin acording to the type of ms you have.
thx for calling me rob.
Had ms for over 19 years now.
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Postby Lyon » Mon May 05, 2008 2:38 pm

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Postby cheerleader » Mon May 05, 2008 3:02 pm

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
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Mon May 05, 2008 3:09 pm

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 :lol: .
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Postby robbie » Tue May 06, 2008 5:21 am

funny, i'm in a wheel chair full time now and i still don't understand the how, when, why, where of the different types of ms. don't really know what my own ms is or was, i just know what has happened.thx for the replies.
Had ms for over 19 years now.
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Postby Lyon » Tue May 06, 2008 5:31 am

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Postby robbie » Tue May 06, 2008 8:07 am

The ONLY thing that matters is the boat you find yourself in. When it's all said and done, who gives a shit what they call it?

your right Bob it dosen't really matter how you got there, just that your there.
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Postby robbie » Tue May 06, 2008 1:02 pm

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 over 19 years now.
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Postby gwa » Tue May 06, 2008 1:05 pm

robbie,

This link was posted on the Drug Pipeline forum. It is really fascinating about how the immune system is attacked and well worth your 45 minutes to watch it. There is even some HOPE in it!

gwa

http://www.youtube.com/watch?v=uzw6_cWqdkY
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Postby Lyon » Tue May 06, 2008 2:16 pm

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Postby gwa » Tue May 06, 2008 5:46 pm

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.

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Postby cheerleader » Tue May 06, 2008 6:28 pm

Thanks, GWA!!!!
It's the Big picture, BIG picture.
Highly recommended viewing-
I love this video and seeing Dr. Chandy connecting the dots.
You can tell he is excited by this research.
bless him!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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