Hello all! I am so scared! I really fear the plasma exchange.....was up till 3:00 then woke up @ 6:00..........

I know it's silly, but I am still scared! Hate this darn disease! My neuro told me I won't get better until all of the infections are taken care of - so I will be receiving IV antibiotics, but am still scared!

The way that thing feels as it goes into my neck! It hurts like heck! And when they take it out - yeesh! Last time they put too much Heparin in my line, so there I was with an IV in my neck and hand and wanted so stick me - the IV in my hand wouldn't give any blood, and I just broke down!

It was awful!

I am so scared!

I try to find the positive in stuff, but I am finding it realy hard to find the positive here!!!!

ERin

I wish had words or that I could be there to hold your hand. ( it would be might cold..it's only 30 degrees here right now )

I really appreciate it! That is why I love neuro talk - everyone here is so amazing!!!!!

It is 43 here in SA and raining - like a bad country and western song.......

Now all I need is a train whistle in the background to complete the picture!!!

Erin

and a drunk to spill beer on you. a floozy to try and steal your man. your horse to run away and your geee-tar strings to break.

Hey...we just need to think of a tune. This could make a million. I bet we can get Kelly Pickler from Amercian Idol to sing it.

I think I'm starting to understand why you are so scared of needles... you get yourself all worked up and tensed up so they're much more uncomfortable than they need to be. I used to be the same until very recently. Two straight weeks of getting stabbed got rid of that in me I know it is much easier said than done, but try to relax, the needles don't hurt as much if you are relaxed.

You've had plasma exchange before, you know how much better it will make you feel when you're done. Try to focus on that. IV Antibiotics sucks but again it sounds like you're going to need it to get past this bump in the road.

Vent all you need to and don't bottle your fear up but don't let it overcome you. You'll get through this just fine Erin.

Cheers,

Brian

I know how you feel, I have been stuck so many times and had to have a central line put in twice and both times it went south, first one slipped out of place on its own and my nurses would not believe me until I called my Dr myself and demanded Xrays and sure enough the IV meds were going God knows where and second time it was in my neck and 2 very bad nurses came in to flip me without reading my chart first and yanked it out, plus I was supposed to be flat on my back for 5 days since they cut into my spinal cord and if they had read my chart would have known, so I have terrified whenever I hear needle and not only was I a nurse I was most fearless person alive before all of this

Not sure where your neuro gets off thinking that if you fix the infections, you'll get better. You may, and you may not. This letting you crash BS and then doing a MAJOR procedure is not working. Has he noticed? You need some ONGOING scheduled maintenance. If he can't give you that, you really need to find a neuro who will as he's doing you absolutely NO favors.

MG is a disease of exacerbations and improvements. It's the nature of the beast. The best plan is to have a dose of something(s) on board all the time to try and minimize the flares.

Good luck,

Missy

Erin,

It is ok that you are scared & it is healthy that you are honest about it. Just hang in there, and keep the faith. Yes MG SUCKS!!! So do the treatments. But allow yourself to feel. I will be thinking of you & praying for you. When do you go in for the plasma exchange? Keep us posted!

Peace, Nancy Lee

I do feel much better after this last round of plasma exchange - just wish I could have a port put in me to minimize all the wear and tear......

Apparently they can put one in for the IV IG but not for the other........On the positive side I was much more relaxed during this one - no crying this time, just held the nurse's hand and rode it out - the guy was really fast, too!

It will get better! I was just having a pity party for myself.......nothing more pathetic than that!!!!

I do truly miss the way things used to be, then I look around and see all of the people who aren;t able to do half of the stuff I do and feel......small and petty..........

How are you?

Are you feeling better?

Erin