Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Isew 08/27/2011

Just wondering how many have a port in their chest for PLEX?
I am so nervous about it. I had one put in in May and after 5 treatments
It was removed. The hope was after 5 treatments I would be better. I did very well for about 6 weeks. Now I am going to have 7 treatments and then make the decision on continuing. I am also starting Cellcept.

Please let me know about your experiences on this port.
They also talked to me about having the one put in my arm for the long-term. Any information will be appreciated.
Thanks!

krbunn 08/27/2011

I have had a tunneled catheter in my chest/neck since April. No problems with it. Completed PLEX so it will be removed on Monday.
Kerry

catladyme2 08/31/2011

I have the long term AVF (Arterio- Venous Fistula) connecting an artery to a vein allows blood from the artery ,which is of a very high pressure to flow to the attached vein. Due to the pressure of the blood from the artery the vein becomes enlarged. This allows large needles to be inserted into the vein.
This is an out-patient surgery. I have no trouble what so ever with my fistula. No ports to be cleaned or no risk of infection. In my opinion, for long term Plex this is the way to go.

Wishing you strength,
Gail

deleted_user 09/01/2011

The port can be a great tool to enable PLEX without going through all the misery assciated with finding veins, collapsed veins and the rest of the complications associated with doing PLEX. I had 17 rounds of PLEX over the course of a year and it was getting harder and harder to find a vein in each arm. At one time, a new nurse, unaccustomed to phlebotomy techniques, trained on me and stuck my arm 6 times befor another nurse took over and found a vein. The first nurse actually did some damage, going right through the vein. The port eliminates this problem. Go for it.

Curt

catladyme2 09/01/2011

Sorry, I meant to say...for long term plex a fistula is the way to go.

Isew 09/01/2011

Thank you everyone for the information. I heard from the Dr. today
And he suggested having the fistula put in. I will find out more details
Tomorrow when I go for my PLEX.

Other questions...how often do you go for PLEX?
Is there a certain long term protocol?
Thanks again!

krbunn 09/01/2011

I have had PLEX three ways.

1. 5 days at a time in hospital.
2. once every two weeks.
3. Weekly

Kerry

catladyme2 09/01/2011

Everyone is different as to how often they recieve plex. I've been getting it for 5 yrs now. When I first started it was 2x a week. Then 1x a week, to every other week. this went on for months. Now I have a treatment once a month. I tried stretching it out to 5 or 6 wks but was not a good idea. Now my neuro basicaly lets me decide when I need it. So I have an open order. Who better knows your body than you?
Good luck with your appointment.

Sending you strength,
Gail

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