OK,

So, I'm meeting with a neuro who actually studies MG tomorrow. He's a practicing neuro as well as a teaching professor of neruology.

I have a list of questions that I'm planning to ask him (mostly revolving around me getting into remission and what I can do to get there), but was wondering... if you were in this situation what would you ask?

Oh take advantage of your time with this Dr. Wish I had one around here. I am at a brain freeze right now on what to ask but if you are keeping a list of things make sure to remember to take it with you.

Good luck and keep us posted!

Hey Brian,

I would ask him if there is something I should be doing? What about excersize?

What meds he thinks I should be taking and why? Have him explain side effects and how those meds would mix with other meds you may already take.

Tell him about the lung/breathing problems you've been having if any. Tell him of all your major concerns & symptons and ask quesions.

It would be a good idea to have them all written down ahead of time. If you've had tests, maybe you could have the results of those with you. At the very least, the date you had them and the results told to you by your doctor.

I don't know if this has helped, but good luck...I'll be keeping good thoughts.

Hugs,
Pat

Hi Brian,
As a small complement to Pat's suggestions, I would ask what I should avoid to do…
I recently had a shot against pneumonia, and was sent back about a year ago…!
Good luck with your appointment and don't forget to take notes so that you could do a comprehensive report of your discussion to all of us!
Maurice.

Brian, I've had similar conversations with a couple neuros. We went through the drug options - and why I couldn't have them - and the side effects.

Probably what most doctors don't talk about are the "alternative" options, like taking C0Q10. Or having supplements while you take those other drugs like Prednisone that help with the side effects (i.e., fish or flax oil).

This is going to sound trite but I don't mean it to be. Deepak Chopra is a very introspective and well-educated person, committed to health/well-being topics. Have you read anything of his?

http://store.chopra.com/showitems.asp?deptcode1=510

The only fault I find with this particular way of "thinking" is that if you don't "think away" your illness, the guilt that comes with that is paralyzing. As if you are responsible for your own illness because you can't think positively enough! I do find his thoughts about healing DNA/RNA quite interesting.

And I know I'm going to sound like a broken record but enough sleep, whole, organic foods, sensible supplements, no stress, laughing, etc. have a big impact on our health/immune system.

The drug choices for MG are finite so far. There's always the risky chemo plus stem cell therapy but not many people have done that (Johns Hopkins has). It comes with huge risks, including an MG crisis while you basically don't have an immune system left.

Only you can decide what you need to have remission or a better quality of life. I hope you guys have a good discussion.

Annie

While I'm not a big fan of Deepak.... (I find his writing to be a bit condescending and overly simplified) I do have exercise options, diet, vitamin supplements etc. type questions on my list.

Brian, I was just wondering how long it took for you to get the appointment with this Neuro? It's Dr. Nicolle, right? I have just been referred but haven't heard when the appoint. is scheduled for what is involved. Could you give me an idea of the process for you. thanks Melanie

I'm not Brian but I was so lucky that from the time my neuro Dr. Tokar referred me to Dr. Nicolle I was in London to see him in less than 2 months. In the mean time Dr. Tokar had me on mestinon until I could see Dr. Nicolle for the tests etc. etc. etc.

I was very surprised at how quickly the appt process went. From referral to visit was less than 2 months. I was expecting to get squeezed in sometime in March or April when I first mentioned it to my GP...

Hey Brian,

What was Dr. Nicolle like?