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Do Your Myasthenia Gravis Specialists Involve You in Your Treatment Decisions?
Do you feel that your Myasthenia gravis specialists involve you in decisions about your treatment? Are you presented with various options and their pros and cons? Or does your doctor encourage the course of treatment they are most familiar with to treat past patients? MG treatments need to be individual to the patient as all of our cases are unique, and we respond differently.
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11 Replies
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My specialist has made all the decisions automatically with few explanations. When I had a bad reaction to my Covid jabs he made adjustments quickly – doubling the prednisone and adding CellCept. No explanation given but it took care of the problem. I am ok with this except that I have had to figure out my symptoms on my own. Especially my swollen cheeks and off and on blocked nasal passages. All I get from the specialist is that it is not the MG. My other Docs have no idea either. A little fustrating.
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At New York Presbyterian neurology you must be involved and agree with your treatment.  About an hour after I have my appointment I get a note from the hospital asking me if I was involved, if I understand and if I agree with my treatment. And if I was treated with respect and was listened to. If I do not say yes the doctor must call me and make sure I can answer yes. . That’s why I like this type of neurology department. If you go to a stand alone  neurologist or group they have no one to answer to. Plus she must answer any of my portal questions or phone messages that day. No waiting at all. Feeling confident in your doctor for me is very important.
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While I was in the hospital with my initial MG symptoms the hospital neurologists followed the book. They advised me as to what they were doing &  why,  but not much about options unless a particular approach wasn’t working.Once I was released my out-patient neurologist has been very inclusive of me in discussion about medication, treatment options and has shared his thinking about my overall situation & prognosis.  A welcome change.
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My specialist includes me in the decision making process. Why? Because I insist on it. Besides having MG I am also a type 1 diabetic and have been for more than 30 years. My view is that diabetes is not an illness but a condition, therefore it has to be managed as well as treated and nobody knows my body or has a more invested interest in my wellbeing than me so I have to take responsibility for the management of my conditions, To do that effectively, I have to do my own research into what treatments are available, what are their strengths and weaknesses. Too many people sit back and let the professionals make all the decisions. My advice to anyone new to MG is start as you mean to go on. Be active and interested, any medical practitioner will tell you that they prefer a patient that is interested in what they are doing rather than one that is passive. Dialogue between the patient and the doctor is integral to effective treatment whatever your illness or condition.
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Edward, I think you will find that one of the common side effects of prednisone is swollen cheeks. Sometimes there is redness along with it. I am surprised that your MD didn’t know or disclose this to you.
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I just say I look like a chipmunk, but not quite as cute!
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Yes. My neurologist responds to a lot my questions about research that I do toward aggressively pushing toward total remission. He prefers to go with established treatments rather than experimental trial treatments.
He supported my having a thymectomy, even though I’m 72 and have a number of co-morbidities.
I’ve told him that I’m trying to get hold of some FcRn receptor inhibitors without having to go to China to get them! :))
Wayne Eisen
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Wayne, 12/23 as you likely know is the approval date with the FDA, then Medicare has to approve but it should be available after the first of the year according to my neurologist.
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<p style=”text-align: left;”>Btw, bravo Peter Quirk!</p>
Way to go! -
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<li style=”text-align: left;”>Btw, bravo Peter Quirk!
Way to go!
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Absolutely allows my participation.
as a cancer survivor, I learned to be my own advocate, research the newest and greatest and try to align myself with research and or specialty institutions that do research and know the latest treatments. This site and the participants input has been invaluable to see who is doing well and who is not and what their treatments are. I want to I cur the lease side effects and as one noted above, move towards remission. Not just get by. Life is too short. QOL is critical. -
Theresa G, thank you for your post! 12/23 is FDA approval date for which drug? Not only Medicare approval… also Kaiser approval is needed in my case. These treatments will get approval eventually.
Best wishes to all!
Wayne
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