Meeting with a researching/practicing Neuro
 

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 :D 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?

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.

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

Brian, I'm glad it went well for you.

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.

That all sounds very promising. It would be wonderful if the pred would heal the lung damage at the same time helping the MG. If I recall correctly you had some reservations like me about taking pred. Maybe it would only be a short course of treatment. When do you think you'll be seeing your GP and do you think he'll be the doctor you'll be working with concerning your treatment? I bet the new neuro you find will be a good one since he/she comes reommended by Dr. Nicolle. Good luck with everything and keep us posted. Take care.;)

Hugs,
Pat

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!

My weakness is with my swallowing/speaking. I have very minor ptsosis on the left side that does get noticeable when I try to force my eyes in one place for an extended period of time... but I've always had that. I have minor limb issues but I really think that's mostly due to atrophy rather than MG. chicken wing test didn't show any weakness, but upper arms held to your side, forearms straight out in front of you and don't let the doctor push them open did show some fatiguing. It is a really small muscle that controls the arm in that position/movement that I didn't really build up before I had to stop the gym.

My GP is a great guy who has done a good job of looking after me so far. I'll probably not bother tracking down a new neuro unless mine doesn't come back. This trip has given me the info I need so that I'll be able to work with my GP to manage my treatment on my own.

I did have reservations about starting steroids. They absolutely have their own complications and that was what Dr. Nicolle stressed. Mestinon is a great drug for treating the symptoms and it comes with the least side-effects of any MG drug. To get "better" at this stage, I have to go to something that will suppress my immune system for a while. Pred is a 6 month - year course before it would do what it needs to... Immuran is a year plus before it has finished doing what it has to do. A combination of the two is also an option. Celcept is unlikely due to co$t.

As we know each person is different and reacts different etc. etc. etc... that being said - Dr. Nicolle put me on prednisone & immuran - prednisone because it would kick in faster along with the immuran - I was slowly weaned off the prednisone and done it by 9 months - by that time the immuran was working on its own. I will be on immuran the rest of my life but come spring Dr. Nicolle is going to cut down my dose and see how I do - they do this to see what happens and if you can get by with a lower dose. During the time I was on pred I had bloodwork done every week then every two weeks... keeping close eye on my liver etc. etc. .... now I have bloodwork done every 2 months for liver and white/red bloodcells. I honestly don't know if I had any side effects from prednisone - I didn't seem any different but my eyes sure got a heck of alot better faster!! Immuran can take 1 year to work - that is why you go on prednisone too - to get faster help.
My neuro here at home said I am one of only two in her practice that can handle immuran - most are on celcept - and Dr. Nicolle has ways of getting around the cost of celcept if you can not tolerate immuran - saying its the only option etc. etc. and costs are covered then.
My MG is in my eyes mostly - now under control. As Dr. Nicolle says - treatable but not curable...

Cellcept has gone generic here in the US (just a couple of months ago) -- not in Canada, yet? Costs are WAY down.