This was the most informative presentation I’ve seen. Sally was very engaging and was an energetic speaker..Dr Guptill presented some info that I was unaware of…appreciated the information. Thanks
My first crisis I was on a bipap qnd vent fir 20 days throat muscles shut down could not eat or swallow for 40 days thank God for intervene protein or I'd be dead and plasma forisis it's a terrible disease if gad since I was thinking 27 then crisis at 32 I'm 42 now and I've had a few goid years when went into remission for awhile now I've been pit for a year now lost my job lost dam near everything but I never give up hope please do not give up its q battle qnd a hard one but
It was really reassuring to read your message thank you 🙏. My uncle had suspected mg and is in intensive care on a ventilator 😢, we all thought the worse.
@@embira4256 its a hard battle from what I've been through if he fights it he will have good years and bad years but never give up who knows there making breakthroughs a the time tell your uncle to fight fight fight .for better days will come qnd make sure they pump him up with prednizone big time and if it's MG get him on plasma forisis immediately to get him out of thus crisis and pyrostigmine after
Where are my now is the 1st statement that lady made1 my neurology said After spending months trying to get into the neurologist said that they didn't even believe in the disease too I can't get treated for it I'm trying they want me to be on everything Seizure pills to heart pills to breathing pills I went from working full time And riding my horse and being happy to living as a prisoner in my own home I can't even go shopping I can't walk I live this is not living I shouldn't say I live this is not living I'm a prisoner my own home! My obstetrician which I never had to see Nox constitution before told me look in the back of your throat will going to look in the backyard throat and little dangly thing it's crooked and you're seeing double vision the doctor said oh when I is Bigger than the other and when I drooping maybe that could be from your/maybe it could be from something else I don't know I feel like it's from I'm sent from 1 doctor to another and nobody's telling me anything .now to go to a doctor Do another and they don't tell me anything They send me to another specialist and it's very difficult when you're totally improve my They send me to another specialist and it's very difficult when you're totally improved like disabled which I am To a doctor when you live in Pennsylvania. I used to have grace and balance and I can't even walk to the bathroom anymore I just sold my horse , I had her when she was 2 years oldWe have to I had to sell it when she was 18 my service dog I couldn't even walk him because I couldn't walk So poor I had to sell my house,ybasically When was people go to the bathroom once a week at least Now once a month is good for me all these things have to do with the Vegas vein and see 1 through C3 well I never even knew there was a Vegas thing and All these things have to do with eyesight and the breathing and everything else I found that out on my own Because I couldn't understand why the things were happening to my bodyi I have horrible physician care and I don't know what to do she acted like I was being a pain in the ass but I asking for more testing they actually accused me of being a bigit and I said I have the United Nations in my family I'm asking what the rapid derivates of my muscles, eyesite Breathing digestion all these things added upgoing on my physical therapy of horse have trainers ° I worked for the school district for 20 I used to have grace and balance and I can't even walk to the bathroom anymore I just gave away my horse basically and she was a registered cord of horse I had a situous 2 years old I'm Knicks I could have trainers ° I worked for the school district for 20 years you think I went for being an intelligent out going individual to living like this you think I went for being an intelligent out going individual I have to make rangements I mean it's I'm getting to the point where I don't care anymoreI so everything I could propose 17 pills they want me to be on more pills! For the
Also happily be tested for anything you'd like You can even use me as a lap rat. I am not afraid to die but I'm not a I'm just afraid not to live and this is not living.
