Oh Gabe! Thank goodness you don't have that type!

I can't even imagine how scary that would be!!!!!!

I asked about the MuSK type @ the hospital and no one even seemed to know what I was talking about - scary!!!!

Hang in there!

Erin

Well I'm slightly confused.

As with Gabe, I too finally conceeded to having a PICC line put in. As she said so well, it was like admitting that I was 'sick', and having it visible for the world to see on my flabby bicep. And although it's only been accessed 4 days thus far, it sure is a blessing to now not have the pain of being a 2-1/2 hour pin cushion, and the anxiety that comes with it as well. And let me tell you that the nurses are VERY VERY happy that I finally went with it.

When I spoke with my neuro about continuing my IVIG, and mentioning how the veins were no longer co-operating, he stated that IVIG itself is NOT harsh on the veins. It is more that scar tissue develops every time you get needles in the hands, forearms, etc.

Erin, I don't understand when you say that you had your PICC line taken out? Do they put it in for your treatment and take it out after each one?

Maybe they do things differently up here in Canada, but apparently they can leave them in for up to a year. I just get my dressing changed every week and have the line flushed with some saline at the same time.

Lydia

Oh yes! Every time I have a PICC line inserted they take it out when I'm done with my IV IG - talk about gross!

I am now considering a permanent port in my chest (less fuss and muss) and they can access it very quicky - thank Heaven for that!!! My neuro doesn't seem to think that it is necessary, as I am not all that sick,, but my hema STRONGLY recommended it - I am completely confused, though I'll do anything to try and stay strong for my fellas.............

Today was a GREAT day! My home is starting to look festive already - I know it's soon, but I never know how much energy I'll have in the future and figure that I may as well do it when I am up to it!!!

Tell me moe about you - how are YOU? What were your symptoms? How old are you? When were you diagnosed?

You'll have to forgive me, but I am still a newbie (I was diagnosed on March 6th and had a thymectomy April 22nd).

In fact, there are still days when I wake up and think that this has all been some sort of terrible nightmare (until I see my huge amount of pills that I have to take.......)

I have decided to be as positive as possible. I have this disease - it does not have me! I have been really blessed with a great support group and am thankful that I have insurance for all of my meds........

When you have some time, I'd love to hear your story!!

Take care!
Erin