Hi Jeanette, I'm so sorry to hear that you've had a bad day, but glad to hear that the fresh air made you feel a bit better. Sometimes, just change of scenery helps. You're in my thoughts and prayers my friend. Hope you feel much, much better tomorrow..

Hi Roberta, what a nice and comforting note you just wrote to me. Thank you so much for your care and compassion. That made my day! Yes, hearing that my improvement on Vyvgart was most likely a placebo made me mad. He added that even sugar water makes some people feel better!!! I couldn't believe it. My daughter and I were both holding our breath while I was on Vyvgart thinking that at any moment I was going to react to it and they'd have to take me off of it. We were both pleasantly surprised when I began to feel a lot better and stronger only to have him change the diagnosis and take me off of it. It's been an uphill battle ever since to get any doctor to listen to me and consider the fact that even though I tested negative for all known MG tests, I just might be seronegative MG instead of FND. So frustrating!! Thank you again for your lovely note. 😍

Diane im so sorry to hear this has happened to you. It's unbelievable that your doctor could even suggest that the infusions that were helping you he would say it ws a placebo effect. And leaves you stranded without anything.
It makes me angry for you.

I hope sincerely you get answers and help.
I didn't know what FND was so I looked it up and found a site with a diagram of symptoms.....very similar to MG.
But if the vygaary was helping why couldn't they have you on it and do more testing.

I've had rude doctors before who didn't seem to care either about my pain etc.

I'm hoping you get some answers and relief.

(I have quit medication that wasn't helping and will take care of myself until the appointment with the new neurologist in December)

🙏🫂

Thank you, Diane. I'm okay, I had a bad day in bed and poorly with double vision and generalised weakness. I'm undecided about my pain meds so quit them, as they affected my digestion quite severely. I'm proabaly going to go back to them later as otherwise my mobility slides further, the weight creeps up and so on. This evening I got some help to take some fresh air, which has helped a bunch. Nice to see your message.

Bless you Jeanette and thank you so much for your wealth of information. I'll have to go back over your answer to glean all of the info you included. That is very helpful. Many grateful thanks to you. Hope you're having a good day.