Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
hi everyone. i am new on here, and am hoping that some of you can weigh in with recommendations for a doctor. i live in massachusetts and have been to boston, but haven't had very good look finding someone who is both knowledgeable and personable and who will listen. it is really important to me that the person i'm working with be a good listener, and be of the belief that while i might not know the medical reasoning behind whatever is going on with me, believes that i know my body best. i really need someone who will listen and learn with me. i'm sure i'm not alone in this, as i'm guesisng all of us have been to see someone who is patronizing and condescending at some point.
i am willing to travel anywhere in the states for the right person, if necessary, but would really love it if i could find someone between maryland and maine (maryland, delaware, new jersey, new york, connecticuit, massachusetts, new hampshire, maine).
thanks in advance for any info you might be willing to provide!
julie
We all struggle with finding a neurologist that works for us. I hope you find someone who fits your own needs. I think we do not always need to find the perfect doctor, as we can mold doctors to meet our needs rather than vice versa more than one would think.
I, too, wanted someone who was an expert, but somewhat of a partner in the treatment. Someone who let me weigh in on the decisions and planning based on my own evaluations of my progress. And I did get one, although it was by evolution rather than choice of the right doctor.
However, to make sure I held up my own part of this, I did a great deal of reading online at reputable sites on MG beginning with the myasthenia gravis foundation and support groups, then sites of larger medical institutions. I had been a medical research most of my career, so also read all of the research I could find on the internet too and asked dozens of questions on forums like this one, read every old post I could find, and did a good job of educating myself in the first few months. My doctor was very impressed as I was actually able to ask pertinent questions. She changed the interactions and suggested readings for me to do as well as advice like "When you read the online forums, you may find that folks who do well come, get advice, get treatment and when it works, move on. Whereas the 15=20% of folks who are refractory (normal treatment doesn't work) have much difficulty and stay on the forums giving folks a somewhat worst case scenario of MG."
So when I got myself educated so I could understand symptoms, treatments, side effects etc., , I did feel like I was a worthy partner in my own treatment and my neuro realized I did really want to understand and assist with my treatment at many levels And so orders became suggestions, statements became questions, and she knew her "how are you doing?" question would be answered with concise clarity.
I have learned that doctors are not much different from others in that if you present yourself as someone who will be involved, does expect explanations and listening, they generally adapt to you. Some of it is in setting the expectations early on and committing to the work necessary to be a partner.
I knew enough not to bother her about my feelings about MG, as I thought that a waste of both of our times. I did at first say something to the effect that I would not accept a life that was not of decent quality, and would chose my exit rather than live that way, and so if we erred it would be to over treatment rather than under. She counseled patience and counseled to be aware that side effects of meds might mess with my emotions too, and so before making any rash decisions, to talk to her about treatment changes and to a counselor of some kind about feelings.
I could complain as much as I wanted and seek sympathy and advice on this and other forums where people who experience the same thing actually understood what I was going through; what we were going through together. I learned about coping here; about side effect strategies, and likely scenarios. I got a lot of reassurance that things would surely get better if I persisted and they did.
At visits with the neurologist I was concise, had my own evaluation ready (mostly -- I am not improving fast enough--can we up the mestinon and prednisone or the opposite).
I also convinced her to use the electronic messaging system to answer most of my non-emergency questions and to review any medication changes I was considering without having to try to schedule a visit. That was a 24 hour turn-around and was great for me!
Finally, some advice that I have found from working most of my life in medical institutions with doctors - most are really very intent on getting to the crux of what is the problem we are having, and are not very good at spending time holding our hands and sympathizing over every thing we have wrong especially when MG does seem to make everything about us wrong. So I tried to be concise; have a specific goal with each interaction, and was insistent that the goal be met or at least an explanation be forthcoming. I was pretty organized and so sent a letter (email type message) ahead of a visit, exactly explaining why I was coming in, what I wanted to find out, and what I hoped the result would be. Doing that made my visits very well organized with all of my doctors (endocrine, neurology, sleep and general). feel they did have someone that demanded their expertise, understood what they said and followed plans we worked out together, Much of the time the response was by phone or email and no visit was needed in person.
I still do all of that, although I am in remission from MG right now, the other problems are still with me and I do quite well with this method of interaction,
Good Luck
Russ
I live in RI and have been going to the MDA clinic at RI Hospital for 7 yrs and have had much success there. One dr I have dealt with is George Sachs, not sure if he has an office outside of the clinic or not. I feel very fortunate that the Drs at the clinic know what MG is and how to treat it. Wherever you end up I hope you find someone you like and a treatment that works for you!!
Good luck
Alix
Just like here when people say you get diagnosed when you are really bad shape. Not sure how they can say that if they don’t know how tens of thousands of people were diagnosed and at what stage. Seems ridiculous. They don’t know that.