Advice on Getting GP Support?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Advice on Getting GP Support?

Postby bibliotekaren » Mon Jul 20, 2009 5:50 pm

Hi All,

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.

Thanks,
Donna
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Postby peekaboo » Mon Jul 20, 2009 6:22 pm

it is good that you have your Neuro on board and for hte recod that is all you need for a referral. But to have your team work together I can see why you are worried about your GP.

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,

Holly
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Postby mrhodes40 » Mon Jul 20, 2009 6:31 pm

No problem for me either, went great. She was all in
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for 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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Postby cheerleader » Mon Jul 20, 2009 7:00 pm

We made the mistake of not consulting with our GP first...and she was hurt and angry when Jeff got back. They've made up now, and she's supportive and inquisitive. The lesson is to be open and include your doc before you go to Stanford. This is a big deal, and you need a home team to look after you when you return.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Mon Jul 20, 2009 7:49 pm

My GP was informed before I left for Stanford - I had given her a copy of Zamboni's 2008 research to read. She was ready and wanting to follow any direction given by Dr. Dake. It has made it easier for the follow-up blood testing - the staff in her office are really interested in being a part of my recovery.
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Postby CureIous » Mon Jul 20, 2009 8:55 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 2:56 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby bibliotekaren » Tue Jul 21, 2009 10:09 am

Thanks for the responses. This managing the doctor-patient interaction and dynamic when you actually need something more than a general physical is an art. And, learning when to move on too. I'm trying to get it down and learn from the fiascos of the last few years.

cheerleader wrote:... This is a big deal, and you need a home team to look after you when you return.

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.

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

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.

I appreciate you guys helping me sort this out -- most of my journey is solo -- nice to have input.

Donna
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Postby Arcee » Tue Jul 21, 2009 10:19 am

Donna, sounds like you are sorting through things really clearly. You may find the comments from my PCP helpful. I sent her some abstracts and made an appointment for a consultation. Not only did she find the procedure intriguing and was totally on board with monitoring the Coumadin, she also told me that she respected my approach. PCPs don't often have patients who are thoughtfully educating themselves and planning well in advance and cluing in the PCP. So your efforts to think this through so carefully and set yourself up so positively may pay off in terms of your stance more than the substance you can offer. (You already know this, but I figured I reiterate because we all need reinforcement to get through this process.) Best of luck with it!
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Postby bibliotekaren » Tue Jul 21, 2009 4:56 pm

Arcee wrote:PCPs don't often have patients who are thoughtfully educating themselves and planning well in advance and cluing in the PCP.


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.

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.
Donna
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Postby peekaboo » Tue Jul 21, 2009 5:17 pm

Can't wait to hear when you are going to Stanford. Good luck...

I could a crack job and cranial message right now.
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