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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#11 | ||
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1st of all, Bluesky (can you share your real name? It's ok if you're not comfortable with that, but I just feel like we are all treated impersonally enought by docs!), I want to say welcome to our forum, too!
![]() My personal experience with neuro's who think it's all in your head? The only ones I've had problems like that with have been men! The female neuro's have ALL at least listened and tried to understand and find my issues. That's not to say there aren't good male neuros, but my experience is that they have been more egotistic and less willing to be a partner with me. Maybe it's the side of the brain they use, I don't know! OK, 'nuff of that! First, you have added what could be another indicator of MG - the problem you had following surgery. After an MG dx, they call in neuro anesthesiologists because there are certain "knock out" drugs we shouldn't be given & they monitor you much more technically than non MGer's. I have some tips to help you get better results from docs. When I started doing this, I found it's easier for me and faster for them. List all your symptoms by when you first noticed them. Not just typical MG symptoms but anything that has seemed to change on you from before you realized something was wrong through current. Include a column for notes where you can list what seems to make it worse or better or if it comes and goes, whatever. Also list any meds, OTCs, and vitamins you are currently or have taken in the last year. List any tests you have had done, where, and try to get copies if you don't have them to send or take with you. I also note all doctors, and surgeries by location, date, etc. If you do this on a spreadsheet, it makes the appts. easier - I just write "see attached" on the forms they have you fill out at the docs office and give them a copy. Way easier on your brain and your muscles ![]() ![]() You may want to consider keeping a diary of what's going on with you now if you don't already. This is helpful in nailing down times of day that are worse, what helps, what makes you worse etc. Please don't get to where you hold anything back, that can cause a good doc to miss the right dx for you, which can make everything even more difficult. There are good, caring neuros that love a good challenge, although it doesn't sound like you should be such a big challenge to one that knows MG. If I can do anything to help, please let me know. Best of luck. If I find anything on neuros in Portland that may be good, I'll let you know. Quote:
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Becky |
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