2nd attempt at Participation in CCSVI thwarted
Posted: Tue Apr 13, 2010 4:49 pm
Hi All...
I'm pretty frustrated right now. I thought I'd throw this out there for opinions/advice. On the upside, I think I have another GP who may be willing to write a requisition for testing at Dixie Xray in Woodbridge. Just need to vent but any input is welcome.
---------------------------------
1st attempt: I contacted my local MS Clinic in London ON requesting their assistance for the BNAC study...they refused to assist any patient requesting such assistance as they claimed to be overloaded with requests after the November 2009 W5 show aired.
2nd attempt: Yesterday I went to my GP requesting a requisition for doppler ultra sound testing at Dixie Labs in Woodbine and was refused.
These were my thoughts after the appointment yesterday 12Apr10 (very rough notes). Any thoughts/feedback is welcome.
A very frustrated
Hope
__________
Interupted twice right at the beginning by door knocks, once left the room for a few minutes, the other time just consulted with {his secretary}at the door.
\When he asked, so where is this going, what happens when the tests come back? I said, my plan is that if these tests come back showing stenosis, I will then pursue a complete tests at either False Creek in BC or Westmount Medical Imaging in Montreal at my own expense. Then I will need to find a vascular doc willing to do the surgery. Part of his response was, Well, what am I doing to do, go through the phonebook and call all the vacular surgeons until I find one who knows what I'm talking about?"
"I'm part of the old boys club" "I'm really very conservative" I really don't feel comfortable sending you for tests when I don't know what they are and don't know what to do with the inforrmation when it comes back."
"This sounds experimental to me. Sounds like this will just open a can of worms and it will just get complicated" (paraphrasing, but something to that effect).
I made reference at least once to the research I had given him (in December?) regarding CCSVI. He did not acknowledge that he remembered this, much less had read any of it.
Attempted to explain the research and telling him where to find more info, reccommended W5 shows from Nov and Apr (he wrote the dates down wrong). Also recommended website This is MS, but he cut me off and said that he wouldn't have time to look at that and W5 was probably all he could do then said, "when you're sick you have time to look at these things on line, I don't have time with my practice etc etc"
Dr {***} encouraged me to find another Dr, maybe a specialist who knows more about this who would be willing to make the referral. I said, "So you want me to go out and find another Dr to write the requisition, but I'll have to get a requistion to see that Dr from you. He replied that that would be correct and appeared not to see any issues with this. He explained that that way he would have someone to talk to about further tests, procedures etc. ??? Does that make any sense? Seems like a wild goose chase to me. What Dr is going to give me the time of day without a referral to see him in the first place? And if I was going to get a referral to another Dr, why would I bother going back to Dr Saly about this? Or maybe that was the point?
Since when are patients required to come up with their own referralls (further come up with a Dr that will give me a referral for the test, but whom I will have to have a referral to see in the first place??? How much sense does that make?
At the end of the day he refused to give me a referral to a specific place (Dixie Xray in Woodbridge) for a specific test (for insufficient venous drainage from the brain through the jugulars) for which staff at that clinic have been specifically trained to do. Is that in itself ethical? "First do no harm" comes to mind.
In the MS world as in the stroke world, "Time is Brain."
I exlplained to Dr {***} that regardless of CCSVI's connection to MS, if our viens are not draining our brains properly (studies so far say anywhere between %50-&100 of us) then that is an issue in and of itself, regardless of it's effects on MS. I explained to Dr {***} the "cataract scenario" i.e. it seem ridiculous that MSer's are being denied this testing/treatment because it's like saying, "You have MS and you have a cataract, but we don't yet know if the cataract is the cause of MS, or has any connection to MS, so we cannot ethically test or treat you." He seemed to get that, but it did not sway him.
----------------
I'm pretty frustrated right now. I thought I'd throw this out there for opinions/advice. On the upside, I think I have another GP who may be willing to write a requisition for testing at Dixie Xray in Woodbridge. Just need to vent but any input is welcome.
---------------------------------
1st attempt: I contacted my local MS Clinic in London ON requesting their assistance for the BNAC study...they refused to assist any patient requesting such assistance as they claimed to be overloaded with requests after the November 2009 W5 show aired.
2nd attempt: Yesterday I went to my GP requesting a requisition for doppler ultra sound testing at Dixie Labs in Woodbine and was refused.
These were my thoughts after the appointment yesterday 12Apr10 (very rough notes). Any thoughts/feedback is welcome.
A very frustrated
Hope
__________
Interupted twice right at the beginning by door knocks, once left the room for a few minutes, the other time just consulted with {his secretary}at the door.
\When he asked, so where is this going, what happens when the tests come back? I said, my plan is that if these tests come back showing stenosis, I will then pursue a complete tests at either False Creek in BC or Westmount Medical Imaging in Montreal at my own expense. Then I will need to find a vascular doc willing to do the surgery. Part of his response was, Well, what am I doing to do, go through the phonebook and call all the vacular surgeons until I find one who knows what I'm talking about?"
"I'm part of the old boys club" "I'm really very conservative" I really don't feel comfortable sending you for tests when I don't know what they are and don't know what to do with the inforrmation when it comes back."
"This sounds experimental to me. Sounds like this will just open a can of worms and it will just get complicated" (paraphrasing, but something to that effect).
I made reference at least once to the research I had given him (in December?) regarding CCSVI. He did not acknowledge that he remembered this, much less had read any of it.
Attempted to explain the research and telling him where to find more info, reccommended W5 shows from Nov and Apr (he wrote the dates down wrong). Also recommended website This is MS, but he cut me off and said that he wouldn't have time to look at that and W5 was probably all he could do then said, "when you're sick you have time to look at these things on line, I don't have time with my practice etc etc"
Dr {***} encouraged me to find another Dr, maybe a specialist who knows more about this who would be willing to make the referral. I said, "So you want me to go out and find another Dr to write the requisition, but I'll have to get a requistion to see that Dr from you. He replied that that would be correct and appeared not to see any issues with this. He explained that that way he would have someone to talk to about further tests, procedures etc. ??? Does that make any sense? Seems like a wild goose chase to me. What Dr is going to give me the time of day without a referral to see him in the first place? And if I was going to get a referral to another Dr, why would I bother going back to Dr Saly about this? Or maybe that was the point?
Since when are patients required to come up with their own referralls (further come up with a Dr that will give me a referral for the test, but whom I will have to have a referral to see in the first place??? How much sense does that make?
At the end of the day he refused to give me a referral to a specific place (Dixie Xray in Woodbridge) for a specific test (for insufficient venous drainage from the brain through the jugulars) for which staff at that clinic have been specifically trained to do. Is that in itself ethical? "First do no harm" comes to mind.
In the MS world as in the stroke world, "Time is Brain."
I exlplained to Dr {***} that regardless of CCSVI's connection to MS, if our viens are not draining our brains properly (studies so far say anywhere between %50-&100 of us) then that is an issue in and of itself, regardless of it's effects on MS. I explained to Dr {***} the "cataract scenario" i.e. it seem ridiculous that MSer's are being denied this testing/treatment because it's like saying, "You have MS and you have a cataract, but we don't yet know if the cataract is the cause of MS, or has any connection to MS, so we cannot ethically test or treat you." He seemed to get that, but it did not sway him.
----------------
I will keep on keeping on. Someone will listen to me, even if I'm just an ant on yet another rubber tree plant!