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Old 06-14-2013, 09:21 AM
Fortunatos Fortunatos is offline
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Join Date: May 2013
Location: Canada
Posts: 194
10 yr Member
Fortunatos Fortunatos is offline
Member
 
Join Date: May 2013
Location: Canada
Posts: 194
10 yr Member
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Quote:
Originally Posted by Stellatum View Post

I don't think there's much chance my neuro would try me on 3,4-Dap. I tested negative for MuSK, too. I'm just thinking that if 3,4-Dap helps people who have MG but don't respond to Mestinon, who knows--maybe it will help me. Any thoughts?

Abby
Hello Stellatum I understand your want to experiment with this medication. I have always offered to be a participant, or risk-taker. I am currently on medication that is contraindicated in MG.

I really can appreciate your doctor's comment about his comfort zone, and I respect that because if I read your mail, correctly, you're in the "I dunno" category. Medicine is ever-changing so if you are interested in this medication, I would ask him. What's the worst that can happen?--he says no, and you carry on with your plan.

What can enter into a doctor's refusal or willingness to participate are the regulatory bodies (both American/Canadian) who govern doctors. In other words, this can be is a medico-legal issue. The following are the basics for my side of the border, which will give forum viewers some insight into the
thoughts on off-label.

"...The CMPA <<(these are the big, legal guns!) frequently receives calls from members asking for medico-legal advice on the off-label use of medications or devices, and has a number of files on the matter involving legal actions or College complaints.
A review of the cases highlighted the importance of physicians taking the following actions:
Reviewing the available medical literature (e.g. guidelines from medical specialty organizations) and considering if the proposed off-label use of the medication or product has gained enough acceptance among peers.
Taking reasonable precautions to ensure that the prescription or use of the drug or device is the appropriate treatment for the patient’s condition.
Advising patients that a drug or device is not approved for their particular condition.
Obtaining and documenting the appropriate informed consent before using the drug or device off-label..."

http://www.cmpa-acpm.ca/cmpapd04/doc...p1203_15-e.cfm
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"Thanks for this!" says:
cait24 (06-14-2013)