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
. And it can be easily updated, which it sounds like you're already finding happens alot!
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.
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Originally Posted by bluesky
Whoa!! That's the guy I emailed on the east coast. I was so grateful that he wrote me back right away. I considered going out to see him, but I'm so gun shy at this point. That you say that he's a good listener and good doc though means a lot to me. I think I'll call tomorrow and see if I can get an appointment.
Maybe you can ask this WA guy you'll see in two weeks to redo the AChR antibody test. Problem is that Mestinon has actually been shown to have an effect on the humoral immune system where antibodies are produced. Can you even go off of Mestinon? Caffeine does what Mestinon does (read my earlier post), so you have to be cautious about having that before tests too.
I read your post about the caffeine. Very interesting. I was thinking today about going off the mestinon and only keeping it for when I really can't stand the suffocating. Or maybe that's when I should go into an ER and try to get pulmonary testing. I don't know. Anyway, you're right, I'm going to go off it in the hopes of looking my worst when I see the next doc.
The doctor at the Mayo was Dr. Ahlskog. It says very clearly in my medical records that he didn't think I had mg because of the low titers so I think I'm okay with saying his name. He was very kind and did listen, it just seemed that he wasn't completely familiar with mg.
About the blacklisting, I hear you, I really do. |