Donnchadh wrote:The number, size, and placement of lesions is the result of venous disorders.
jamit wrote:Lesion load and disability is a well known disconnect I am surprised your neuro did not explain this (time for a new neuro perhaps). I have had ms for 20 years and have no new lesions and plenty of accumulated disability. Because of the disconnect I never bothered with new MRIs except recently to get insuance to pay I had to have one with my MRV no new lesions.
BZW the drugdcompanies must love this disconnect because they base their studies for the most part on lesion load, it helps them keep people on drugs that may provide no benefits whatsoever.
Cece wrote:Donnchadh wrote:The number, size, and placement of lesions is the result of venous disorders.
Yes...one big thing missing from autoimmune theory is an explanation of why lesions form where they do. There are people who never have spinal lesions, only the brain...others have no brain lesions, only spine...no real explanation for that in the autoimmune theory. Also they can clinically classify RR, PP, and SP, but offer no explanation for why.
CCSVI has a plausible and testable answer for these 'unanswerables'.
Your second paragraph may be true, but their research was also concerning relapse rate.
My progression has been very slow, but each relapse has hit me hard, like a sandbag to the back of the head - sudden too.
One minute I'm fine, the next I can't move.
So in my case, I feel that the reduction in relapse rate has been the most important benefit.
In ten years, I've had 4 relapses whilst taking Rebif, one whilst I wasn't on Rebif as I'd moved countries.
I had my first MRI since 01 and I had 5 lesions more than the last MRI.
Day to day - life is pretty normal. Yes, I have the usual delightful MS symptoms that most people with RRMS get, neuropathic pain, spasms, sudden fatigue, but these are just part of life. I'm middle aged, nothing works as well as it did 20 years ago.
I had no more MRIs because I was living in the UK. Unless you are in a trial, doctors consider yearly MRIs to be a waste of their budgets.
After last year's sudden and very nasty relapse my new Spanish neuro, applied for funding for me to restart Rebif. This was granted and hopefully, without excess stress or injury, it will be several years before I have another and even more hopefully, testing and Liberation will be commonplace by then.
Until then, I sticking to my Rebif/LDN/diet/Vitamin D3 regime and I'm going to keep dropping hints to my neuro about CCSVI.
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