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A board to discuss Revimmune as a potential therapy for multiple sclerosis

Postby chrishasms » Wed Jun 11, 2008 1:08 pm

They have a chart for rrms, spms, ppms. My MRI said RRMS but my progression said PPMS.(the chart is a progression chart)

http://www.med.harvard.edu/publications ... /chart.gif
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Postby chrishasms » Wed Jun 11, 2008 4:15 pm

An MRI that shows Active inflammation is the sign of RRMS. A MRI that shows less activity, more black holes ( although can be in RRMS ) and the start of atrophy is SPMS, the Atrophy, black holes and lack of inflammation shows PPMS.

See that is exactly what pisses me off about Neuro's. My doc is MR MS i n the western US. Dr. Allen Bowling. He doesn't even take insurance anymore because so may with MS still see him. He gave me that answer.

How many of you got that good of a reply when you asked the difference? I bet most of your neuro's don't realize the FDA gave the names RRMS, SPMS, and PPMS to the different subsets of MS for clinical trials. I talk to neuro's all the time who had no idea.

If neuro's who don't specialize in MS get the shit wrong and give bad info to their patients how in the hell can anyone get good care?

I can't fault you anymore Kyle because it is obvious you believed the lie when you were told your neuro was doing all he could for you. I assure you your neuro wants to keep you with MS because he can't make a dime off you if you don't have it anymore.
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Postby chrishasms » Wed Jun 11, 2008 4:52 pm

Also to stop the firestorm before it starts....yes it's a stereotype and there are exceptions.
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Postby chrishasms » Wed Jun 11, 2008 5:02 pm

Folks I need to explain what I mean by a "good neuro."

When I go into a meeting with them with a stack of research and ALL of my homework done and they glance at it and say ,"No." No thought or time or even effort.

Dr. Allen Bowling of Denver did that exact thing with LDN for me. He may be Mr. MS but as far as MR. Proactive...pffft -ya right! I took LDN and stopped shaking within 45 minutes and nothing else did it. I could quit the LDN and it would come back but he still said he wouldn't give it to me. I had to go to my GP for it!

I never talked with him about any trial I ever wanted to do again. He may be Mr. MS but he is not a good MS doctor.
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Postby cheerleader » Wed Jun 11, 2008 8:17 pm

Chris...
sorry the tube flipped you out. I hope the open MRI is better. They give my husband goggles and headphones and show him a movie or TV show. Last time was the Simpsons, and he had to fight hard not to laugh and shake. (doh!) I've had two MRIs for migraines, and they are not fun. But you can do it-look what you've lived thru! Can't wait to hear about the lack of enhancement and those shrinking lesions.

Kyle, no new activity is GOOD. If your MS is manageable, your EDSS is low, you are in remission, able to get on with your life...then don't sweat it. Keep doing what you're doing, thank G-d (or whomever) for today. If you are "out of wait" to quote Marie, like Chris or Keri - then Johns Hopkins is the best game in town.

My husband is doing OK, RRMS, no new lesions, none enhancing, no new disabilities....but I've got my eye on Revimmune for the future. We've got a terrific neuro, but we're also proactive.
peace,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Thu Jun 12, 2008 8:40 am

They would mention black holes.

Well, they SHOULD, but to be honest I've lost nearly all faith in the diligence and honesty of not just doctors but people in general.

Mel is in early RRMS and has black holes, that's what lead to the drastic choice of HiCy.
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Postby pvns2005 » Thu Jun 12, 2008 8:48 am

How's Mel doing?
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