Bobbi
Forum Replies Created
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Haven’t had IVIG for a while . Started again last month . Had about the same symptoms you did with the loading dose . So the next one I tried to hydrate more , and they added fluids to run along with the infusion . I also took tylenol and benedryl about an hour before .
Made a huge difference . Good luck .
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Sounds reasonable to me . Medicine is taking new turns every day . Hopefully Myasthenia will be interesting enough for someone to look .
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Yes, after 6 years of treatment . My doctor decided that I don’t have MG , it’s not even a neurological problem . And she can’t help me . This after I was in the hospital for 3 days because of a crisis . Because I’m seronegative .
The home health nurse , physical therapist , and new doctor disagree with her . It’s not “nerves” , asthma , or any of the other things she suggested .
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I was diagnosed 7 yrs ago by symptoms only , all tests came up negative or iffy .
Now my doctor says it’s not a neurological problem , and she can’t help me .
I’m curious what others used to be diagnosed . -
Thanks for posting . It’s heartening to hear others stories , when you’ve been belittled by doctors telling you , that’s not an MG symptom .
I’m not familiar with genetic testing and results . Is that what they used to diagnose you ? Being seronegative or did your doctor go on symptoms ?
Thanks again , you give me hope . -
I would like to follow this conversation . Being seronegative , after six years of being diagnosed . Because I am in remission , my neurologist feels that she made the wrong diagnosis .
Because according to her , there is no such thing as remission . So I don’t have MG . -
I’m not comfortable with zoom , but would like to be a part of this group .  I’ve been diagnosed seronegative for 6 years . Now the same doctor is questioning her diagnosis . It sounds like peer pressure .
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Hello , new to this site . I am also , seronegative . And now after 6 years , my neuro is doubting her diagnosis . Very disappointing .