I've been reading here for a while, downloading the articles, reading my old MRV/MRI reports, dusting off the anatomy books, and having lots of ah-ha moments.
I have been phone tagging with Dr. Dake for a while. Saw my Neuro last week -- she supports this for me as I have atypical MS and known cerebral venous issues from brain surgery last fall. My N wasn't familiar with CCSVI but took the main article notation and documented it and my pursuit in the dictated office note. But am getting worried about my GP -- I don't have a long history with her.
I saw Mark's post about getting his GP on board (congrats!). For some reason I am intimidated. I have a strong background in A&P (dissected cadavers in another life) and could discuss it relatively well. However, am worn down from the dismissive medical journey of the last years. I could use some advice and support for this hurdle.
In my case my GP fell righ tin line...GP being a jack of all trades that could not dispute the evidence I provided and therfore went along for the ride.
Good luck to you,
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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dx dual jugular vein stenosis (CCSVI) 4/09
So true Cheer. I had go through brain surgery follow-up with a GP that had been radically dismissive. But it all moved so fast that I couldn't walk into a new doc's office asking for them to administrate my leave. Once off leave and working, I began assembling the new team. It's why I'm not in a hurry -- I need a solid home team lined up.cheerleader wrote:... This is a big deal, and you need a home team to look after you when you return.
Thanks for the reminder - I need that Mark. Sometimes I feel like I'm having to pander to them and let them be the alpha dog. I'll want to tell a doc something but instead lay different pieces of info out and let them "discover" what I wanted to tell them and act appreciative when they "inform" me. Maybe I need to shift to a more genuine appreciation of their contribution. I have that true respect for my N but the average GP doesn't impress me with their ability to grasp complex scenarios. Your post hit some critical points for me.CureIous wrote:Edit: Never forget that the difference between selling and telling, is asking a question. "I wanted to run this past you, could you help me with this?" is a good start
I appreciate you guys helping me sort this out -- most of my journey is solo -- nice to have input.
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Arcee, I've found that they either like that approach or not (the GP from last year did not). In my one meeting with this GP she appeared to like my organization and presentation of background reports. I've sent her an email with a link to the publications on the Fondazione Hilarescere site letting her know that's what I'll be talking about at our next appointment. Thanks for your encouragement -- I'm soaking it in.Arcee wrote:PCPs don't often have patients who are thoughtfully educating themselves and planning well in advance and cluing in the PCP.
I was at my chiropractor's office today who I've seen for over 10 years -- she does very gentle cranial and myofascial work on my neck and skull. She thought the CCSVI theory was brilliant and very connected to my issues. As I was on the table, my phone went off -- it was Dr. Dake. I'm planning on going, just a matter of scheduling.
Anyway, thanks for the input.