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Meeting with a researching/practicing Neuro

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Old 10-27-2009, 05:13 PM #1
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Originally Posted by AnnieB3 View Post
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.
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Old 10-28-2009, 01:21 PM #2
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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
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Old 10-28-2009, 05:13 PM #3
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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.
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Old 10-28-2009, 07:05 PM #4
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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 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...
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Old 10-28-2009, 11:44 PM #5
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Hey Brian,

What was Dr. Nicolle like?
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Old 10-29-2009, 08:17 AM #6
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Hey Brian,

What was Dr. Nicolle like?

He and the team were absolutely fantastic. He had scheduled his sit-down with me before my EMG but was running late so he took a few minutes to pop in to meet me and tell me he didn't want to cut our meeting time short for the EMG. He re-scheduled our sit-down time for after the EMG with him and his interns and gave me all the time that I wanted/needed to answer all of my questions and discuss treatment options. This was after their official end of day, the waiting room was empty when I got back from my EMG, the secretaries were all gone for the day etc.

One of his interns did the history questions and physical strength testing tests that go with all initial neuro visits (chicken wings, walk on toes, walk on heels etc.) but he made himself available for quite a long conversation to answer everything I had to know and provided me with a big folder full of reading material for the plane... I think I've read most of it already online, but he was very thorough, very friendly. He told me that he'd be happy to see me again any time I need to, just get my GP to refer him and he'd see me again. My neuro is currently out on leave, leaving my local area void of them. Dr. Nicolle recommended a few that he knows in close cities.

It was a very positive experience and I'm glad I did it.
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Old 10-29-2009, 08:31 AM #7
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Hey Brian,

That's great news. Sounds like it was very productive. When do you get your results from the EMG? Did he make any changes to your meds? I'm glad he was able to recommend a few new neuros for you. I'm so glad it went so well. Take care.

Hugs,
Pat
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Old 10-29-2009, 08:58 AM #8
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Brian, I'm glad it went well for you.
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Old 10-29-2009, 09:38 AM #9
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Hey Brian,

That's great news. Sounds like it was very productive. When do you get your results from the EMG? Did he make any changes to your meds? I'm glad he was able to recommend a few new neuros for you. I'm so glad it went so well. Take care.

Hugs,
Pat
The EMG shows all normal to above normal results. His practice is run out of a teaching hospital so the EMG tech was teaching the Intern while the test was going on... I got my results as they went

Dr. Nicolle gave me several medication options I need to think about. Basically, I can stay on Mestinon at my dose without any concerns, I can freely up my dose to double it and plus... after that I'd have to seriously consider the other options. My MG is well managed right now, but I'm not going to get any better than I am now without going to imuno-suppressing drugs for a while (pred, immuran, celcept). I may look at discussing pred with my GP -- it is also used to help heal the lung damage I have from radiation burns, it could be a better option for me. Dr. Nicolle is sending all the drug info to my GP with recommendations pro's con's.
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Old 10-29-2009, 01:24 PM #10
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Hey Brian,

That's great news! I also got one of those information folders from the neurology team when I had first gone in, and got my diagnosis. It was pretty helpful!

I'm glad that the tests showed that everything's normal.

What are the main areas of weakness that you're still struggling with?

Ttys!
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