My Neuro REFUSES to complete forms for CTEVD Study in Buffal

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My Neuro REFUSES to complete forms for CTEVD Study in Buffal

Postby Hope66 » Wed Nov 25, 2009 2:48 pm

Hi all...

I haven't posted here much but I've been following since February or so. I have also posted on the FB page and I'm more active at Brain Talk.

So yup, uhuh. My Neuro flat out REFUSED to complete the forms to allow me to potentially participate in this study.

Okay, so I've had the forms for a week or so and yes, I didn't fax them to the MS Clinic until 8:15 Monday morning which was not a good move on my part. I should have faxed them before the W5 show and the article in the Globe and Mail.

I was home this afternoon on a day off and the secretary from the clinic called and told me that the Doc would NOT be completing my forms, but that I could have my PCP complete them or I could request my records from their records department and complete them myself. Barring that, she said they could be completed for my next clinic appt which is in April 2010. She was very kind (I could tell she felt bad) and said that they are completely overwhelmed by calls regarding CCSVI and cannot possibly respond to all requests.

Wow. I do not have a good relationship with my Neuro. I don't like him at all as he has been very condescending and patronizing in the few interactions I've had with him (it's usually a resident). I fully expected some kind of push back from him with regard to requesting the completion of the forms for the CTEVD study.

But I did not expect outright refusal. This just happened within the hour so I'm still a little pi$$ed at the moment. I'm absolutely sure my PCP will complete the forms at my request, but I'm not sure that this will be good enough. The request for information clearly states that your Neuro should complete the forms and return them to BNAC.

I think I might cry.

Thanks for listening,
be well,
Hope
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Postby jimmylegs » Wed Nov 25, 2009 2:56 pm

time for a different neuro! maybe you can inquire whether pcp will be enough...
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Postby MS_mama » Wed Nov 25, 2009 2:59 pm

I'm so sorry... it's these things that can make or break a patient relationship. Trust and respect are so important. We are the ones with the disease, we should have a say in our treatment. I "fired" the neurologist who diagnosed me because he made it fairly clear that he would only be my doctor if I was on one of the CRABs. I am now, but at the time I was working through the decision and realized that I could not be a patient to someone who would not respect my decisions.

Hope you can get into the study soon!
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby mrhodes40 » Wed Nov 25, 2009 3:11 pm

I am really sorry about that! It sounds like not the best working relationship. :x

she said they could be completed for my next clinic appt which is in April 2010


Consider the possibility that it is that he insists on being paid for all such activities rather than something more sinister. Docs can spend hours a day on such "unimportant" --from their perspective--paperwork if they do not have a hard and fast policy about it. Maybe his policy is "only during appt."
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 Hope66 » Wed Nov 25, 2009 3:58 pm

jimmylegs wrote:time for a different neuro! maybe you can inquire whether pcp will be enough...


Thanks jimmy...yes, I inquired to BNAC today. I'm sure they're inundated, but I made the email short and sweet.

BTW...I'm not sure why I think this, but I think you and I live in close proximity.

Cheers,
Hope
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Postby Hope66 » Wed Nov 25, 2009 4:03 pm

mrhodes40 wrote:I am really sorry about that! It sounds like not the best working relationship. :x

she said they could be completed for my next clinic appt which is in April 2010


Consider the possibility that it is that he insists on being paid for all such activities rather than something more sinister. Docs can spend hours a day on such "unimportant" --from their perspective--paperwork if they do not have a hard and fast policy about it. Maybe his policy is "only during appt."


Thanks Marie. I'm in Canada, so the thought of offering to pay for the completion of the forms didn't occur to me. Now that I am thinking of it...I don't know...it could be seen as some form of trying to "jump the queue" so to speak? Canadians, oui/non?

If that were the case, I think they would have just advised me that there would be a cost involved?

Anyone?

Thanks again,
Hope
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Postby Hope66 » Wed Nov 25, 2009 4:39 pm

MS_mama wrote:I'm so sorry... it's these things that can make or break a patient relationship. Trust and respect are so important. We are the ones with the disease, we should have a say in our treatment. I "fired" the neurologist who diagnosed me because he made it fairly clear that he would only be my doctor if I was on one of the CRABs. I am now, but at the time I was working through the decision and realized that I could not be a patient to someone who would not respect my decisions.

Hope you can get into the study soon!


Thanks MS mama...I appreciate your support. I'm not sure what my next step will be at this point. I've been lucky enought til now to not have had to rely on my neuro for anything except for yearly renewals, but this does give me new reasons to look elsewhere.

be well,
Hope
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Postby jimmylegs » Wed Nov 25, 2009 4:59 pm

BTW...I'm not sure why I think this, but I think you and I live in close proximity

it's possible hope, where r u located?
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Buffalo Study

Postby mickb » Thu Nov 26, 2009 9:39 am

Hi Hope:

I don't know how it works in Canada but it sounds like your neuro is not a good "fit" for you. I've had to fire two neuros - One for outright incompetence, their not perfect. I finally landed at Jackobs - what a difference! I went in last week and enrolled in the study and got the doppler test the same day!! I know luck played a part but they hustled to get me in - great people. I mention all this because I don't remember any "special" forms - I did fill out history and signed various forms to enter the study. I think if you want to participate just call them and find out exactly who needs to approve what. They are just completing the first group now and will be unblinding these in a few weeks.

Mick
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Postby Miss_Feisty » Thu Nov 26, 2009 10:16 am

"Most" medical forms in Canada are billed for, many doctors don't work from the kindness of their hearts, not unlike other professions ;)

Some forms may have coverage through insurance and all personal costs for forms would fall under medical expense deductions on your taxes.

I'm assuming each province is different regarding billing procedures. Often I don't ask the cost of a completed form and receive a surprise bill in the mail.
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Postby dlb » Thu Nov 26, 2009 11:19 am

Hi Hope,

I agree with what Mick said. I pm'd you about my experience. I had emailed Buffalo regarding the study just before the show on W5 aired and y'day I got the questionnaire which I was able to complete myself. They were very straight forward questions that I had no difficulty answering, but I have (from the beginning) gotten copies from my GP of everything that has come to him from my neuro. I don't know when they expect to complete their compilation & selection process at BNAC or if I fit their criteria for the next study - time will tell
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Postby bluesky63 » Fri Nov 27, 2009 8:44 am

Hope, that's awful! I'm so sorry you don't have a good feeling about your neuro. I don't know how it works in Canada, but I would urge you to find someone you can work with. Think of it this way: If you have an emergency and you find yourself stuck this guy making a crucial decision together, you need to be able to trust the doctor.

I hope you can get your paperwork in quickly, however it can be done. Sending good thoughts -- for the paperwork and a better neuro!
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Postby Algis » Fri Nov 27, 2009 8:50 am

Like Bluesky mention; just bypass the Neurologist: go to the first general practician and openly express your request and I just cannot see why a Doctor would refuse an 'exam' in order to see if you have a problem or not :o

Be persistent! Be a cramp; be a pain... But get your exam :roll:
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NEW NEURO TIME!

Postby girlgeek33 » Fri Nov 27, 2009 6:00 pm

I went through 3 neuros. You have to find someone that you are comfortable with. And actually the neuro I have been going to for over 5 years, I went to him in the past and felt he was too by the book. When I went back to him a couple of years later, because of insurance, he was a different Dr, he had grown. he was more open minded and realized that by the book was not doing much for MS. This is your health & care. Not his. You must be comfortable. Outright refusal is ridiculous!

I hope you find a better neuro!
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