Jessica, What you said really worried me. You need to call your neuro right away. Do you have one? What meds are you on, only the Pred?

You can get temporarily worse on Pred. When it does kick in, you may feel awesome or you may feel just ok. Everyone is different. What dose are you on?

What you are describing sounds like you are on the verge of a crisis, if not in one. If you can't breathe in well, you need to be in the ER. How close are you to Mt. Sinai? UCLA sucks, sorry, but it does. Unless you have a neuro there who can call ahead to let them know you're coming.

Seriously, the inability to do things with your arms is a HUGE warning sign. Do something and do it right away: Either call your neuro and/or go to the ER.

I hope you will get some help and feel better!!!

Annie

Thanks for your concern...the problem is these are the symptoms I have been having since my son was born, also when I was DX (which is only 2-3 months since the onset of ANY symptoms). With my meds I am ok, but my arms tire within 2-3 minutes of using them, and I start to feel the strain in my diaphram if I am trying to talk and stand at the same time. I read a post the other day describing the symptoms of MG as a kaliedescope (sp), and mine have started changing since the Pred. I just upped my dose to 10mg. I started at 5mg last Tuesday, and have been instructed to up it every week until I get to a dose I want to "try out" for a while. I feel since I started the Pred, like the Mestinon is giving me less relief, also, where it was lasting 4-5 hours on a "normal" day, it's only lasting 3 max, and I'm also maxed out on my Mestinon dose for the day...I have noticed slight improvement since my surgery...I used to get a swollen lumpy feeling in my throat very often, and I just realized I haven't had that in a while...but my major concern, is that I have my infant at home with me all day, and there are times in pretty much everyday, that I can't pick him up from the floor, and get him up to my chest. Also, I am due to return to work next week. I have an awesome work from home job, so I really want to get back to it, but with that and the baby, I need to know what I can expect the Pred to do for me. If I should be feeling back to my old self, then I have a long way to go, but if it will just extend the relief of the Mestinon timespan, or even reduce the weakness a little...I just have want to know how to proceed with my life. My Nuero did say I could go on Disability if I needed to, but I feel like I can get by as long as I have an idea how long till I'm better, or if I'll even get better.
Sorry for such a rant...

Jess

Hi Jess,

I don't see it as a rant, Its good you can talk about it.

I'm a bit concerned about you being told to up your pred dose til you get to a dose you want to "try out" for a while. In my thoughts pred is something that should be closely monitered when you are first put on it. My neuro put me in hospital and started me out on 60mg daily, I was in hospital in case the high dose had a bad effect.
I really feel for you not being able to pick up your baby, it must be so frustrating.

I wish I had more to say, but I'm a bit short on brainpower at the moment, but I'm sure someone will be along soon with some words of wisdom!!
take care
Kate

Jess,

Huge hugs I started the same way, with the birth of my son, I could do nothing, I too would drag him to me as I couldn't lift him. I know how scary this time is for you but take heart, within a year of my thymectomy I was in a drug free remission and was able to raise my children. I am out of remission now due to an accident and just started back on mestinon, I forgot how it was to see without trouble focusing LOL I do not take prednisone as it makes my MG worse {very sensitive to meds}

As for work, I would not go back until you are 100%, remember that taking care of yourself and the baby takes enough out of you, add work to the mix and it is harder. If you have disibility ins. through work I would fill the papers out.

Please feel free to contact me should you want to talk, as I said I understand where you are, as I was the same exact way!

Joanmarie