Originally Posted by bchgrl

Thanks for sharing Anna. I’m sorry about your diagnosis as well. That must be so hard with kids!

I have a few questions for you or anybody else who can answer them. You mentioned IVIG treatment. One of the things I’ve wondered about and have on my list of questions for the neuro, is how often they can do IVIG. Do they only do it if you are in crisis mode, or in my case, before a surgery? I’ve tried to research this, and I seem to find different answers which just confuse me more. (Not to mention I can only stay on the computer for so long before I get nauseous because of my eyes, ugh!) I mean do they ever do infusions as a standard treatment every few months or so to re-energize you?

Also, you mentioned an MG clinic, where is that and what do they do there?

You and Annie have definitely convinced me to ask my doctor about taking the pyridostigmine more often but maybe in smaller doses. He hasn’t mentioned any other medications to try yet, but I’m sure when I see him Thursday and he sees how I’m doing with current meds and dosages I’ll find out more.

Thank you again!
Kristi

I have set some “goals” for my husband and I to look forward to in up the upcoming coming months. First, we usually spend the winter in Florida. In fact, we would already be there if this hadn’t happened. My goal is to go after the first of the year. My neurologist already said I could get a neuro there, and maybe they could work together. I’ve planned other simple things like a concert in April, and big things like a cruise next summer. Of course everything is refundable. I’m happy you are able to do your photography again. (The photo is beautiful)