I had 10 days of treatment. I thought I had 10 treatments but my husband says it wasn't that many. It is scary at first but the people who do it are really good at it. You will get used to it . Isn't that bad. Just sort of like running your blood through a filter.

I certainly hope you are getting mestinon. Are you?
A really stupid doc took me off mine when I couldn't swallow because he said it wasn't helping
That was a huge mistake. We have to have our mestinon

I had 5 treatments of plasmaphresis while in the hospital and it wasn't too bad. I would kid with people all the time and tell them I look like that alien from the movie, "Predator," LOL! When you get the port in your neck, it will be a little sore for a couple of days, so moving and trying to sleep will be a little difficult for awhile. It's a little unsightly and annoying, but this too shall pass~The filtration process itself was not bad, I just had to make sure to eat something before I went or else I would have an upset stomach afterwards. Overall, I was elated to get it out of my neck when those 5 treatments were over, however it went from there to the top of my chest. But, this spot is better than the neck, you can hide it! You will be fine through it all!

Welcome to the group. Best of luck with your plasmapheresis. Wishing you all the best going forward.

I have two bard power ports since February 2012, no regrets. That is when I started plasmaphersis . I have gone weekly but up to every two weeks. It is not bad, I am usually very tired afterwards and go home and sleep. It might make you feel a vibration feeling in your lips if so tell them and they can give you calcium . They have me bring Roland's as it has it in them and I munch on them thru the treatment.
Good luck,
Annette

WHEN I HAD MINE THEY JUST PUT A LINE IN MY NECK NO PORT AND IT WAS NOT TO BAD. I JUST HAD TO BE CAREFULL WHEN I WASHED UP,IT WAS BETER WHEN IT CAME OUT AND THAT WAS IN JUNE OF 2010 AND THANK GOODNESS I HAVE NOT HAD TO HAVE IT SINCE.
GOOD LUCK AND WELCOME TO THE GROUP!!
Chuck

Welcome! This is a great group of people!
Plasmapheresis (Plasma-Exchange, Plex).
It worked wonderfully for me, something like 14 treatments - before my Neurologist moved me to other therapies.

The neck shunt sounds scary, but it went just fine.
Both with insertion, and removal. Most people seem to tolerate plasmapheresis very well; the doctors & nurses are specialists, and will have good experience with Plex.

With Plex, many people see good improvement in their symptoms.
It's not a cure, but it can be immensely helpful.
Keep us posted, as you go along!
- Ross
PS: almost forgot. At the top of these discussion pages, there is a search engine. Type in: plasmapheresis (then try - plasma exchange - then try Plex). Lots of discussions wil pop up.

Good luck to you. I am sorry all of that "liquid gold", as some call IVIG due to costs didn't work. I have received plasmapheresis on a regular basis for over 3 years. The cath is needed for plasmapheresis procedures so close together. I would guess that you will receive treatments every other day to keep fibrinigin levels normal (a clotting factor).
As Annette stated, do let them know if you are feeling tingling or feel like your body is vibrating. These are signs you need calcium with your Plex. (Hypocalcimia). If you start to get nauseas, have them slow the procedure down. A slow "rinse back" is helpful to me. The nurses running the procedure will know what that means.
Hugs
Sherry

Welcome to the group! Ive had plasma many times over the years and as Ann has said , you will get used to it. The nurses in my opinion are all amazing and they have your best interest at heart.

Paying close attention to how you feel during the procedure is important as everyone has said .

Best of luck with your plasma and hope you respond to it as positively as I have...Cj

Thank you all so much for your input! I just got done with the first one. My Neuro is going to do it every day for five days. I tolerated it well, but am a little tired now. It's my oldest son's 18th birthday, so he came to the hospital to have lunch with me and watched it for a while, kind of freaked him out, but I think it was good to see. He and his 15 year old brother haven't really understood what Myasthenia is, and why I've been so "lazy" lately, so the upside of all of this is it's brought everyone onto the same page.
It seemed horrible to wash the "liquid gold" IVIG away after we fought the insurance so hard to get it, but I went downhill last week after it, so I guess it's ok. I'm on Mestinon Timespan and 60 mg of prednisone, that dose has tripled over the past 3 weeks to try to stop the negative turn.
I'm so glad to be here and have others to talk to who are going through it. Myasthenia is a wild and crazy ride, and sometimes I don't think I even make sense talking about it to people who are trying to understand but just can't get why I don't know how to fix myself!

Good to hear that all went well! Take care and keep us updated.
Hugs!

You are defiantely right.....Now when you say you are tired they will say
"would you like me to get up so you can rest here" or they will say
"don't push yourself Mom, you need to rest up for...."
I really see my first crisis as a blessing(well maybe) because I never had to explain myself again.

Mama Glad to see your treatment went well. Sorry you... or any of us for that matter.... have to deal with any of it but it sounds like your son was supportive... Ann ... i love your comments about "crisis taught em well" the no explain thing is great...

Hope you have a great night of rest and feel even better tomorrow

Mama of 7
You are right....you will find it won't matter anymore if others understand....I found after I found this group I didn't feel the need to talk to other people as much.
Before this group I found myself talking about it to others all the time and they had no clue.
Now I can come here and don't feel any need to talk to others, except my husband, anymore.

Ann and Maureeen you both hit it right between the eyes , good word for lack of another. Until this group came into my life i use to think I was talking to a brick wall.

Im going to sleep now god willing with a smirk on my face because of you guys , now lets see f Cj can sleep ha ha...Good night all and thanks as always.

So glad to hear first treatment went good...