Here are articles suggesting that people who have tested negative for AChR antibodies and MuSK antibodies might have low-density lipoprotein receptor-related protein 4 antibodies. http://www.ncbi.nlm.nih.gov/pubmed/21387385 and http://www.ncbi.nlm.nih.gov/pubmed/22158716 and http://archneur.jamanetwork.com/arti...icleid=1150052

One of these articles said that people with Lrp4 antibodies don't respond to Mestinon. I know that people with MuSK antibodies often don't respond well to Mestinon, either. There's new evidence that MuSK MG patients respond to 3,4-Dap, which is also used in CMS.

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

It's worth a try, as it's not really a "baddie" as far as meds go. Ask your neuro(s) as the worst they can do is say "no."

My neuro has told me before that he's only willing to prescribe drugs he has experience with, so I expect he'll turn me down. In that case, I plan to ask him to consult with his partner, and if that's a no-go, I'll see if I can involve the Boston MG specialist who diagnosed me.

Abby

Exactly--there has to be a "first time" for every drug script to be written. Hope you can get it easily, but if you can't, just do it the HARD way!

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

Thanks, that's helpful. It means that if my doctor and his partner are unwilling to try the experiment, it might not just be because they're unwilling to take the trouble. It's important for me to realize that.

It was my current neuro who sent me to Boston to consult with the MG specialist who diagnosed me. Before I went to Boston, my neuro wasn't willing to give me Imuran, because I wasn't diagnosed. When the MG specialist diagnosed me, my local neuro was then willing to treat me for MG. They know each other. Maybe if the Boston neuro recommends a 3,4-dap trial, my local neuro will feel more legally confident in giving it a whirl.

Abby

I am on 3,4 Dap for Lems. It is only available through certain doctors who participate in research studies for particular diseases on a compassionate use basis. My local neuro referred me to a neuromuscular specialist who can prescribe it. Even though it is relatively safe and free from serious side effects, it has not been approved by the FDA for regular distribution. It has been in use for Lems and Congenital Myasthenic syndrome for over twenty years. It has been tried for other neuro muscular diseases, but apparently with not enough benefit to justify its use.

Thanks so much, Limpy, for letting me know. I know that there are studies that show it can be helpful for LEMS and CMS and maybe MuSK, but none I could find about double-seronegative MG. That means I wouldn't even fall into the "compassionate use" class.

Abby