Quote:
Originally Posted by AnnieB3
Hi, Vicky. Can you do a new post? I'm afraid this will get lost in this one!
What neuro did you see? Your daughter does not need to see a pediatric neuro, unless those are the rules in the UK (you are in the UK, right?).
The fact that your daughter's test was positive WHILE she is on an inhaled steroid should have been taken more seriously. Steroids, even an inhaled one, make the signs of MG go away.
To me, she sounds as though she desperately needs more meds. She could go into a Myasthenic Crisis. Please get her to a neurologist as soon as you can! Not the same one, of course!
I'm sorry that you both have MG. The antibody levels do NOT determine severity in MG. And one can't tell by looking at someone how bad they are! Stupid doctor!
MG fluctuates greatly throughout the day. Did this doctor even do a clinical exam?
I hope your daughter can find a neuro to help her. Anyone here from the UK know of a good one in her area?
Annie |
Thank you for your reply I have just joined this site and don't really know what I am doing. Yes we are in the uk and basically the NHS is under staffed, I think there is probably only a few paediatric neurologists in the whole of Yorkshire and probably half of the country. She has just had a 2 week course of antibiotics and a 5 days of steroids for yet another bad chest infection. The neuro got her to hold her arms out for 30 seconds and walk down the corridor and got her to follow a pen with her eyes for about 30 seconds too, which she told her it gave her double vision. Neuro not interested in that either! I have just managed to get her an appointment for Wednesday to see the paediatric consultant who told us she had mg and a positive test and refered her to a Neuro so will see what he says . Thanks for your reply