Robert Devine
Forum Replies Created
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Apparently medical schools aren’t doing a good job of training doctors.Despite attending 8 plus years of learning practically every one of them misses not only MG but in my experience many other conditions. I have been in the medical field for going on 50 years and have never seen it so bad.
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I cannot help with your probiotic question but it makes sense with the gut brain connection try to google it. I also have ocular and was told by my neurologist the same thing he only has me on mestinon which does help with symptoms but not the disease progression. After doing my own research it became clear that people ocular MG has a lesser progression to generalized when they took mestinon for symptoms and an immune suppressant drug notably prednisone which works to control the autoimmune response. There are other suppressants that can be used also but the key is to add them to your regimen. You MUST locate an experienced neurologist by searching and asking for recommendations on forums like this for your area. Many neurologists are not experts with mg but fail to tell you this. I am now on the third one – tried 2 at Cleveland clinic – you have to have a specific name to ask for or the large practices just give you to whoever is the least busy doctor and they all say they are equal and experienced with mg but this is not true. There are many factors that influence your chances of the condition going from ocular to generalized ie age at onset the older not as good, positive emg test, positive acetacholine antibody test but try to be proactive I’m going for a third opinion next week as I had to talk my current neurologist into giving prednisone.
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Did this occur at the Cleveland clinic by chance
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Yes exactly the same thing. They seem to be very resistant to changing doctors within their group. I feel it is more the policy of the clinic not as much with the individual doctors. I’m an RN and have always felt that it is our personal right to choose a physician as they are not all equal in their abilities to treat dispute having similar credentials. Keep fighting to connect with who you choose not who you are given.
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Makes me wonder what else your neurologist doesn’t know ask her/him to look up the definition of remission and remind her you did not say cured.