You've all made me think a lot about my experiences with the disease modifying drugs.
Ian, when you wrote the following, it made me think that my most recent MRI may have been done with an older machine. There were no enhancing lesions, and nothing glaringly bad in regards to old damage, but I have gotten worse in the past few years in several ways. Almost like aging 30 years in three years.
Also, when I had my two IVSM treatments, they had an opposite effect on me, my walking degraded, I lost weight, and cognitive functions suffered as a result while on them and awhile later as well.
bromley wrote:My recent posting about the 8 Tesla scanner showed that there were many more lesions than could be seen with a conventional MRI scanner.
There was also some research about patients with progressive MS who were treated with very powerful immuno-suppressants. These patients still experienced atrophy / more disability despite the treatment...
Thanks for that link. I'm sure that will help lots of us.
I had a stats class in college, but math is not my preferred subject...
BTW, there's an excellent article on understanding clinical trials in Accelerated Cure's newsletter
You make a good point, and hopefully some of the things we are doing are in the right direction. I hope it's soon that they figure out more pieces of the puzzle. And thanks for referring me to Ian's post.
Lyon wrote:Upon asking, any reputable researcher will quickly admit that those things (increased permeability of the blood brain barrier, inflammation, myelin loss, lesions, axon loss and brain atrophy) are only the aspects of the MS process which have been identified to this point and might also point out that those are not necessarily the entirety of the MS process.
Thanks for explaining that. That makes me think about what I've gone through the past few years. I'm feeling worse, but the brain MRI is clear of enhancement. My white blood cell counts have been lower the past few years on the injectables. I'm trying to stay in the Tovaxin trial, where I need to have enough of the MRTC's for them to make the vaccine from my blood. My doctor thinks that my overall low WBC counts may disallow them to get enough of the MRTC's. Apparently higher WBC counts indicate inflammation (and more presence of T cells), and I haven't had this in the past few years, although progressing. What a puzzle.
Manchester wrote:ewizabeth- MS progresses with or without relapse in all types of MS, even, in my opinion so called benign MS. Neuro-degeneration is probably present long before the first symptoms show and long before a person has a 'relapse'.
However, it may be that inflammation affords some level of protection and the question is getting the balance right between enough inflammation and too much inflammation, in MS usually there is too much inflammation and this also causes damage but this damage is separate from the underlying neuro-degeneration.
Thanks for all the good insight and references plus thought provoking conversation you brought to us with this. My family has several of the aforementioned diseases... and if not autoimmune, then what?
Researchers have found clusters where families suffer from more than one "autoimmune" disease, but does it necessarely mean that those families have something wrong with their immune system in the first place? I personally don't think so. Of course genetics (or epigenetics) more or less define our susceptibility to them, but there might be also other things in common with different "autoimmune" diseases.
Some researchers have already suggested that MS could be a "metabolic and hormonal disorder". If that's really the case, you could say the same about diabetes and some thyroid problems (maybe RA, too). On the other hand, in a recent study researchers were able to cure diabetes in mice by shutting down some faulty nerves. So maybe one day the "autoimmune" reaction in diabetes is found to be caused by damage in the nervous system, not vice versa. Who knows?
Manchester already wrote what I was planning to write
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.