This type of experience -- the careful preparation, the research, the ability to provide accurate information where there had been assumptions or hearsay -- this is what will leave a positive impression. It is great that you were able to maintain your dignity and respectfulness, on both sides, it sounds like this time. No matter what approach you want to take with your own health, it is so important to be able to discuss it with your doctor and feel like you are respected for your choices.
It sounds like you handled this wonderfully! (No surprise!)
It comes across perfectly that one of the main things having MS has taught so many of us is HOW TO WAIT.
Next time bring a few CCSVI brochures to scatter around the waiting room. Just simple factual information to address some common myths. Put them inside magazines, in the racks, on the tables, in the bathroom. You never know whose life you could touch. It might even be the doctor or his staff.
Now, I wish I could be in person to say this part -- I am so much better in person, and I want it to come across in the most nurturing, embracing, caring way -- everyone makes very personal choices, and I do not judge anyone -- how could I anyway, since I am not been on any official MS therapy since I have failed them all and had NABs and have anaphylaxis to infusions -- but speaking from the perspective of someone who has lived with significant disability. I have from the very beginning tried to take what I think of as a "shotgun" approach to multiple sclerosis.
In a nutshell, I would do anything within reason to keep from having disability in the first place and then to prevent more disability. I would not pin my life on just one treatment. I have personally tried to use the best of both mainstream and alternative approaches -- always with the goal of keeping a healthy body for a lifetime -- and being there for my children.
And while I am definitely a supporter of CCSVI, and have personally experienced its benefits, I am not sure why, given how extremely new it is, we should be utterly confident that CCSVI is the one true answer to preventing disability in a possibly systemic multifactorial lifetime disease.
I would suggest that we continue to take advantage of every available tool in the arsenal -- again, looking at a lifetime perspective. It is complex to understand how various approaches interact. This is where continued personal research is crucial, and continued coordination with the right medical team is crucial. Don't we all want advisors who understands our true needs and can give the right advice?
I am not so much addressing you specifically, Cece, but your considerations around Copaxone are what made me say this. I have no place at all in your medical decisions, and I feel incredibly invasive even discussing this, but I am doing this for the general concept. Again, I wish I could be in person to get the right tone! My point is to say again that when we're dealing with MS, it can be a really awful disease, and unless you've seen that, you don't understand, and people should want to do everything they can (while still keeping their underlying health -- avoiding side effects like, say, death) to keep from progressing and being disabled.
I think that of the DMDs, Copaxone is fairly benign. Unless it is contraindicated for someone's particular situation I might consider sticking with it. Many people I know who have ended up doing well over years have been Copaxone people.
And . . . maybe it doesn't have to be the MS expert, but continued monitoring, even if it's just to get the meds and to demonstrate continued symptom relief (and to get ready for book club!) will have a positive impact.
Many people turn to a family doctor for a closer relationship. Is this an option? That's what I did after my procedure, and this was a person not only open to the concept but amazed and delighted by it.
You have really opened yourself to the world as you go through this experience. It is incredible to see it through your eyes. I am so happy for your children, your family. I hope that you continue to see benefits. Thank you for sharing everything so gracefully with your online family.