Hello all! Talked to my neuro on Monday and he FINALLY agreed to allow me to have a port put in - either that or a shunt. He plans on me having the plasma exchange every 6 weeks for quite some time - no idea how long right now.......but being able to go back down on pred is always a good thing! I'd love to lose those pesky 40 lbs.....lol!

Just wish I could have had this done sooner. Dr. I also mentioned (for the first time) that MG is a "chronic" disease - well....duh! I think HE thought I'd go into remission by now, so he's trying to warn me............

Hope this finds all of you happy and strong! Let;s remember to keep icknerd in our prayers - she has her thymectomy scheduled for tomorrow!

Big hugs!
Erin

Good luck with the port / shunt.

I know what they are, but I dont know if they have a range of places that they put them? Do you know where yours is going.

Hopefully that will make things easier for you

love Rach

Hey Erin,

That's so good he's having that put in. I hope you do well and feel stronger on the plasma exchange. I felt great after having mine, it just took a while to kick in. Glad you are having the pred reduced too. Take care.

Hugs,
Pat

Hey sweetie! How are you today? How long did it take b/4 you felt the effects of the plasma exchange? Does it usually take a week?

My sweetie and I are alone tonight which means one thing: going to SLEEP early! He's already down for the count, and it's only 6:30 here! LOL!

I'm going to have the exchange every 6-8 weeks for quite some time - a long time, but am looking forward to no more pricks! My little veins have given up on me! LOL

Have a GREAT night!
Erin

Hey Erin,

I'm feeling much better and stronger, thanks for asking. Thinking back, I would say it took just about a week. I had three exchanges, 8 bottles each time over a 6 day period. I couldn't believe how much stronger I felt. I know it had a lot to do with how well my surgery went and recovery. One thing it didn't help was the double vision, but the mestinon took care of that. I'm so glad you don't have to get stuck all the time now and you can go home after you have it. Plus it doesn't take too long. Well, you have a good nights sleep! Take care.

Big Hugs,
Pat

Thanks for the info! I think of the 2 - IV IG gives me the BOOST sooner, but the actual plasma exchange will aid in my goal of remission!

Now I just have to wait for the mountain of paperwork to be handled by my insurance company in order to have my port/shunt put in!

Devon is STILL @ my sis' house, so it has been quiet, but we are planning on going to our friend's home 2morrow night for a spirited game of cards! YAY!
I NEED nights out like that! They are so thoughtful to have us over - that way I won't worry about my home looking like a tornado just blew through!

Do you have any plans for the weekend?

Big hugs!
Erin

Hey Hon! How are YOU feeling today? Are YOU feeling better?

I'm feeling pretty good - Devon is with his aunt and uncle, so tonight I am going to bed waaaaaay early! He is a night owl (like I used to be) so he wants to talk at about 2:30 every morning.....LOL!

If I get the port, it will go in y chest (between my boobs). If I get the shunt, it will go in my arm. Either way, it is going to be GREAT! No more sticks! I am so happy!

Can;t wait to hear from you!
Love,
ERin

Hi Erin,
Im still very up and down almost hour by hour. Im certainly not the worst Ive ever been. Its just my muscles seem to be constantly fatigued instead of me getting some respite. Mestinon seems to be only lasting around 2 hours before I can feel everything becoming sluggish again.

Ive asked my consultant for all my test results but thats yet to elicit a response.

Ive heard nothing from the 4 people I have contacted and will now ask for a direct referal. It seems so much easier in the states to see different people here everything has to be done by referal.

Take care,
Love
Rach

Hey sweetie! I know what you mean -I'm taking my mestinon every 2 hours instead of 4 right now, but this heat is wearing me out! I thought I'd have more ENERGY @ 40 mgs of pred, but not quite yet!

Hope you feel better soon!

love,
Erin

Congratulations Erin! No more straws hanging off your neck everytime you need an oil change; and if they run it there anything like they run it here, if you have the port in you get to do the plasmapheresis on an outpatient basis.