This Is MS Multiple Sclerosis Community: Knowledge & Support

So Keri and I are the only ones eh?

Just curious if anyone else has popped off anything. I am starting to wonder if I am the guy who popps of one or 2 lesions then never has an issue again.

I just feel better than I have in a month so it got me thinking.

Well I have talked with them about retreating but I won't know until March if we will do it. I'm pretty stable right now.

I am thinking we taught them something. I bet you didn't get enough and compared to everyone else, I'm not sure I was kept at 0 long enough. I was at 0 for maybe, maybe a day if that. Chenell doesn't think I hit complete 0 and I don't really remember.

I'm hoping to make it to June, it's my birthday and rather than a bad MRI for my birthday like when I was diag'd in 04, maybe I can FINALLY be rid of this crud disease for a birthday present.

See I wonder who else didn't. Doc B just told me they redid someone else with MS just 4 months ago. I wonder where there counts were.

If you are out there, please let us know!!

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Keri,
I believe there is still so much to be uncovered in MS research. I am pretty sure that it will come soon enough to allow you to have a normal active life. Unfortunately, Revimmune continues to be the sledge-hammer until a more precise tool can mainstream. I know that Dr. Calabrese recently presented in NYC about the new research he is doing at Hopkins. I also know that Dr. Kerr has written about stem cell research he was doing on animals. As far as the Obama administration goes, I am sure it will be a priority. Michelle Obama watched her Dad die of MS.

As far as progressive people like me, I don't have as much hope for being normal. My last search on the NIH website for SPMS showed very little in the way of clinical trials. The thoughts that axonal fallout just happens without immune involvement have never sat well with me, though. If MBP8298 can slow progression in SPMS and people with PPMS have been shown to improve with aggressive IVSM therapy, there must be immune involvement even at the later stages of the disease or disease processes where inflammation can not be detected.

I came upon research that was being done at Hopkins and completed in 2002. One group of MS'ers was getting HiCy. The other was getting cytoxan AND Campath for total immune ablation, followed by stem cell re-infusion. They did test for bands to see if it was effective. Anyone heard of this study? What happened to the groups of people getting this unbelievable protocol? I can't even imagine going thru this.

Sandy

I had talked to Dr. Corboy hear in Denver and he too said, "I would love to see the spinal fluid before and after to see if the bands are there."

I just want to do it again.

Keri,
It's kind of a fete de acompli. I was offered a test when I was pregnant to determine whether I'd go into early labor, which I did. I refused the test, because even if it said I would deliver early, there wasn't a damned thing that could be done about it at that point to stop it. It would only have made me panic to no end. I don't really want to know whether I have those marker bands, because it would only make me obsess about it continuously. As it is, I think about it all the time.

Sandy

What are 'bands'?

http://www.webmd.com/multiple-sclerosis ... spinal-tap

This is better than I could ever do. Corboy would have liked to see the before and after.