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

I know that many people love the NHS, but I keep hearing such bad stories!

Any infection can make MG worse. I wonder if your daughter might have some kind of immunodeficiency: IgA, IgG, IgE, IgM, and IgD. I know that kids get sick more often, but it sounds as though your daughter does more often.

I hope you will get her to the hospital right away if she can't move well, breathe well, or swallow, or is generally overall weak.

I hope both of you will be tested for B12 and D deficiencies. They're very common for people with autoimmune diseases. Watch out for any thyroid symptoms as well.

I hope your daughter takes naps after school. That would really help her.

Going to a pulmonologist is useful, too. They can do a baseline reading for breathing (MIP and MEP are specific to neuromuscular diseases).

Does she use two puffs twice a day while having a lung infection? I need to do that, which is written on my Flovent inhaler prescription. You might want to ask the prescribing doctor about that.

Washing hands a lot helps while in school too, to stop those germs from spreading! Or bringing a product such as Purell hand sanitizer to school.

I hope she will get some help soon!!!

Annie

Unfortunately she gets far to much homework to do naps after school which would be good. Yes she doubles up on her inhaler when she is chesty and takes salbutamol when she moves around school. She takes a hand sanitizer to school and has done for many years. I will be asking the dr about doing further testing depending on his view on the neurologist and will be asking if she can be referred to see a different one if there is a different one. The NHS is under staffed and very poorly run hospitals are not as clean as they should be, hand sanitizer I is needed there too! there aren't enough Drs or nurses and usually the wait to see a specialist is around 6 months!! And then you get one that hasn't a clue about myasthenia gravis which is typical. My neurologist said that any positive blood test means she has it so I will talk to her too but I won't see her for about 3 months now. Thank you for your advice

Try taking her to an adult neurologist.