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 51 years old and was diagnosed with mg just over a year now. Started with double vision and Ptosis. My neuro put me on 120 mg 4 times a day. It helps the symptoms no more double vision but I get slurred speech when tired or exerting too much energy. I still cannot drive and I do this for a living, my neuro refuses to put me on predisone. My question is should I insist for predisone or just be satisfied with living the way I am. I still get tired very easily, sore neck and shoulders. Sometimes hard to catch my breath.
all your advice would be greatly appreciated
thanks
mark
If you are not satisfied with your treatment, it is your responsibility to insist on treatment that will lead to improvement. That can be done with your current neuro by discussing your difficulties with him and if he is not willing to work with you, asking for a second opinion.
I worked most of my life in the medical world as a researcher working with MDs at Mayo Clinic -- Rochester as a physicist/computer scientist and got to know scores of doctors personally and each one is first a human being, and then a doctor.
Doctors have all sorts of ways of interacting with patients from the "I'm the boss, do what I say and don't ask questions" to the opposite type who seem to leave too much of the decision making to the patient. The other thing I know is that doctors are too rushed to really concentrate on any individual's condition; and for the most part learn everything they know about you in about 5 minutes of talking to you. So efficient and effective and brief communications work best.
There may be reasons why prednisone is not reasonable for you, and of course you should ask about this and then ask for an alternative treatment. The advantage of prednisone is the low cost and relatively rapid improvement at high doses. However it does not work for everyone and some folks have other conditions that make prednisone undesirable.
My approach to your neurologist:
Call the office and get the neuro's staff person. State very briefly what you told us:
I have MG. I am being treated with Mestinon only which improves some of my symptoms, but not enough to make my life acceptable. I continue to get worse. I want to move forward into further MG treatment. I have read the guidelines for treatment of MG from Myasthenia Gravis Organization website. I am to the stage where I think I need to begin immune system suppression treatment.
(of course you change it to whatever is true in your case) but don't make it any more. You should also have a list of symptoms written down rather than attempt to talk through them. Most folks when talking to a doctor wander off so far into all sorts of complaints and side issues, the core piece can get lost.
And remember -- you and your insurance companies pay the doctor -- and he/she is working for you, not the other way around. Be firm, brief, and persistent, and if that doesn't work tell him to refer you to another neuro for a second opinion -- that usually makes them get serious as they really don't care to have another doctor think they are under or over treating a patient! And make him explain why he doesn't treat you.
Good luck
Mark