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I definitely need help with this one!! I can almost tell when a bad day is coming – my brain gets really foggy. Does anyone else have brain fog? How can that be handled?
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Stiff person is also being considered for me on top of MG. Bloodwork and many symptoms point that way. Just waiting to see at this point.
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Definitely an issue! I agree that humor helps a lot!!
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John,
I’m with you! I too am going thru something and feel like a baby complaining but know others are experiencing this confirms this is not just in my head. I take Mestinon, CellCept and Prednisone. I have had rituxan without any results and IVIG that made me very sick. The first time I went thru IIVIG, I had good results. This last time has shown no results. Being seronegative kind of limits treatment options so it is frustrating. I try to remind myself that it could always be worse!
Good luck to all!
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I agree, the unpredictability is where I suffer. Not knowing day to day or even hour to hour is tough. I love reading about everyone’s experiences to see I’m not alone and that there are lifehacks out there! Thank you everyone!!
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Lou,
What symptoms took you from Ocular to Generalized? I currently have ocular but feel some other things coming on. I am seronegative so that sort of limits which treatment to use. I am scheduled for five days of IvIG treatment next week because the Mestinon is not working any more. I had Rituxan about 2 months ago without any relief. I, too, am curious to see how this works for you.
Thank you!
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I had it happen with my hematologist. I agree that it is absolute nonsense!! I didn’t even need to see my hematologist as I had a prescription for IVig but they were insisting the hematologist needed to see me even though it had nothing to do with why he was seeing me – and that it would be 2 months!! I NEEDED the treatment and my neurologist was from Mayo so going there for a week was hardly feasible. Eventually, out of nowhere within a week, I got a call that my treatment was set up. After treatment, they tried insisting I had to see their hematologist that, again, was not treating me for anything other than being anemic last year. I had seen him all of 3 minutes and they were acting like it would be an act of God to do this. If I am ever in need again, I will definitely being finding another provider! The last thing you need when you are sick is to have a doctor you are not comfortable with and a practice that treats you like a traitor or hostage! I wish you luck and hate that this is what a lot of medicine has become.