Shannon wrote:Thank you everyone for the advice. I will be following this site closely as I embark on this wonderful journey! Tomorrow is the day that I visit my PCP's office to request the referral needed for my insurance. She has no idea what I am coming in for, only that it is an MS-related issue. I am quite shaky about it actually, and will probably choke and not get the referral. My plan is to bring some papers about this (of course), and to tell her that I have already decided that it is the thing to do, for me, and that I came there to ask her to help me to get the insurance company to back me up on it. All I need is her referral to give this a go-ahead. Am I sounding desperate? Can someone please nudge me in the right direction here with how to go about presenting this to a PCP (not even a neuro!) without sounding like a kook?
Thanks in advance...you all are so helpful here!
Your PCP is probably intimately familiar with the problems that plague MS patients, and how few and far between any glimmers of hope are. You won't sound like a kook for trying to better yourself. While I am PPO and didn't face the same "day of reckoning" type feelings, I still wanted at least my GP on board, neuro would be a bonus. I got both to varying degrees. I'll take it.
You could start with a nice icebreaker like, "Hey, I want to do this radical new procedure, whaddya think?". Okay I kid. Not funny.
There is nothing wrong at all, whatsoever, with asking for help from someone who is there to help you, and most probably got into the profession to help people in the first place. Imagine the frustration so many GP's have dealing with MS patients (I was mildly shocked to find out my GP treated a LOT of MSers), and their subsequent inability to offer much more than the SOP, which aint much, but at least it's something. I remember when my neuro fairly tossed Provigil at my fatigue like it was no big deal. I thought "okay, that should work good then since he was so cavalier about it". Well when it did not a God blessed thing, I understood the cavalier part, since that was his ace in the hole and there WERE no other options. That's when I got it. Luckily my kindly pharmacist recommended only filling half of that very very expensive prescription, since I only used 2 pills and tossed the rest.
Now here you come in, (to the doctor's office) with something that even people who haven't a clue about MS, say makes perfect sense on first blush. Yes I am oversimplifying to the nth.
So perhaps something along the lines of, "I was wondering if possibly you could help me in pursuing this promising line of research into MS". HELP ME. That's the key here. After all, we are pretty much helpless right? (Yes I'm oversimplifying to the nth again).
You might even consider giving her this website since we have so much info consolidated.
I'll get the pompoms out tomorrow and give ya the perfect cheer. You will do just fine. The anticipation is worse than the doing. Keep in mind to stress that you are interested in correcting your malformed veins, wink wink. Probably wouldn't hurt to toss a couple Hail Marys, "Stanfords", Renowned cardivascular surgeon, cutting edge state of the art treatments, and the ilk in there for full effect. After all, you aren't telling her about some quack down at the corner market doing backroom meatball surgery.
Let us know how it goes right away!
Mark.
I am new to this site and have been reading messages here both today and about a week ago, when I first heard of CCSVI. I was reading the messages here today about people who have gotten calls and people who have been for the procedure already. It got me very excited! So, guess what? I just got off the phone with Dr. Dake!! 
I was not expecting a phone call so soon, as I just finished sending in my information this morning. However, I have not yet spoken to the insurance company or my PCP, who likely has never heard of this. 
I am not getting my hopes up yet about going, as I have Blue Care Network of MI as my insurance carrier and also I need a referral from my PCP for everything that I do. It seems like two mountains that I don't care to attempt climbing, BUT I do have the motivation that I need now to make the phone calls and try and make it happen. I checked into flights from Detroit and found some pretty great plane fares. Getting someone to go with me will not be easy, as I have 4 children at home that need to be cared for while I'm gone. I will start looking though! For the first time, I am able to say on an MS message board that I AM glad to meet everybody under THESE circumstances. I have some things such as numbness in my hands that have been there so many years now that I am sure are permanent. I look forward to my urinary issues, severe fatigue, cognitive problems, problems with memory, etc. to be much improved from the surgery. I look forward to sticking around here and reading the posts about others' experiences and posting mine as well. Thanks! Shannon
