Reply To: Hello, I'm new here and looking for a little help

Hi Steve, glad to hear that whatever you have is slow progressing, that’s great news! I will feel like that at times, and then I’ll have an exacerbation and it scares me!!! My neuro isn’t really trying to figure out what I have anymore, which really frustrates me.. as maybe there is a better treatment? I Havne’t breathed well in my sleep since this all started, so I have a sleep study coming up.. I used to have horrible swallowing issues, but those are thankfully better, though not normal.

I don’t know what triggered it – many of the drs question if it was post viral? I had hand foot mouth virus (coxsachie) right before the IUD perforation fun.. with coxsachie – i had awful muscle aches – fever of 103.6, it hurt down my esophagus (all the same places I have issues with now).. but I also almost got intubated with my epidural during my c section a few weeks before that, and was paralyzed in the same distribution of my symptoms now – so who knows!!

Prednisone really helps so many people, I only tried it once, and the dr started me on 60mg (as opposed to starting low and going up).. if felt like I was going to kill over, I did 3 days of it and coudln’t handle it anymore – I was WAAAY weaker.. I want to be the best I can be, but at times I just also feel like I settle for not getting a lot worse, as so many of the treatments have risks.. I’m not ready to risk immunosuppressants yet.. so I guess it just depends how intolerable your symptoms seem

I hear ya with the mind — I seem to have a hard time the day after IVIG.. I get anxiety, scared etc about the whole situation.. and just not knowing.. looking at my kids and not knowing if I’ll be here for them when they are older.. Guess it’s all out of our control, but it’s still scary!