I saw the info about people with MS having differences in collagen in their veins compared to people without MS.
I am excited to see what the research brings along these lines, there will be a lot to investigate it seems. I believe that most of the collagen diseases currently described are considered AI in some way, mixed connective etc are things treated with steroids. Ehlers Danlos is something an unrelated family member has, I actually know a little about that, it is genetic. What is so cool about this new avenue of research is it gives a new place for the researchers to look, perhaps even new gene areas to investigate.
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I was just actually wondering, why does Marie know more than my neuro but doesn't earn $380 for each 15 minutes she spends explaining things on this board?
Thank you very much for the compliment
but I absolutely do not know more than a doctor no way.
But I am not a doctor. When I am here it is as a fellow patient trying to navigate this crummy disease. Doctors could not spend their time answering our questions very well, it costs too much to put a roof over their secretaries, medical assistant's and patient's heads
I like doctors, they work hard and most sincerely care about quality patient care. Many have little time at home because of the demands of the work. Many times I have called a doctor at 2 am to get new orders for someone who was doing unwell and they have to wake up and think at that time of day..... Frequently they spend their lunch hour doing rounds at the hospital, and then after the work day of seeing demanding (hey, they're sick!) patients back to back, rounds at the nursing home. They are required to meet documentation regulations and thus a lot of the day is spent making sure t's are crossed and i's are dotted. On top of this, thousands of new research papers come out every week and they simply do not have time to read them. They rely on their respective guiding bodies for the answer as to what new research is important to understand.
Then they go in to the office and have to hear their patient say that they have now found the answer for MS... on the Internet. If they can reject it quickly, then they can get on with their day and get through what they need to get through. It is really understandable, given the real life demands of a doctor's schedule, that the majority are not interested in seeing this new work as important yet and do not want to make time to judge it for themselves, it is easier, and in many ways safer, to simply wait and see if it catches on with the medical boards; they'll find out soon enough if it is real. If you are the doctor, waiting 5 years to find out is fine, you can rationalize that being certain is worth the wait, and, like all medical professionals, you have learned that some patients will not be saved and you have learned to accept that as just a fact of life. If you did not learn to live with that you'd go mad.
Then there's me...Because my quality of life is already severely impacted by MS, and standard therapies have failed, I am really interested in this new model. It is not OK in my personal situation to wait 5 years; I do not have 5 years, and I am not willing to accept my own loss as an acceptable "cost" to waiting to see if blocked veins are related to MS causation or not. For me what makes sense is to treat the issue and see what happens. My personal doctor agreed with this. I am hugely biased by the urgency of my situation and I was willing to accept risk to get there.
But please understand that all the literature research in the world and anything I can say or explain about it is not equal to actual research proof. When 1000 people have been treated and 3 years have gone by with no new iron deposits, no new lesions and recovering EDSS, then we will know for sure.
Do I think this is the key to MS? Yes I do, but that is just OPINION based on preliminary materials available now. Real research will prove it. Luckily I think that is going to happen relatively soon.
i'll answer other questions in a minute
edit: I guess I should explain why I went OT on my OT physiology thread; I get really uncomfortable with being compared to a doctor, I do not want anyone to think I am a substitute for good medical advice because I am not