Omg. How terrifying. I teared up reading that you were awake and restrained. I can’t image how scary that would have been. I’m happy to hear you are improving!
Absolutely ask to speak with a health psychologist/neuropsychologist. They should have them on staff there.
I have spoken to them a few times and they have been very helpful. They have me on a few different meds for the anxiety, which is helping a lot. Dh and I plan to get some family counseling for all this as well. It’s been hard in all of us, and I really want to make sure my girls are able to communicate any fears/anxiety they have as well.
Absolutely ask to speak with a health psychologist/neuropsychologist. They should have them on staff there.
I have spoken to them a few times and they have been very helpful. They have me on a few different meds for the anxiety, which is helping a lot. Dh and I plan to get some family counseling for all this as well. It’s been hard in all of us, and I really want to make sure my girls are able to communicate any fears/anxiety they have as well.
I’m glad they’re there for you. Don’t hesitate to reach out as you need, and ask for referrals for the whole family. My friends kids benefited from therapy when she was going through treatment for breast cancer.
I know how scary and dangerous MG can be. And how little the medical community knows about it.
May I ask what your treatment is?
They started me on IVIG right away which has been very helpful. They also increased my steroids that I had slowly been weaning down from.
I'm so glad you are doing better and are started on IVIG. So incredibly scary.
IVIG has been great for many of the patients I see (I see peds patients). Some are very sensitive and notice a change if they are even a few days off in their infusion schedule, but IVIG has generally been really helped.
Did your team mention any type of plasma exchange?