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...
My first plasma exchange is scheduled for Monday morning. Does anyone have any advice for me or anything that they wished they had known beforehand? Do you have a favorite salty food you eat the day prior?
- Nan
I never had plasma exchange (PLEX) so can't give you advice, but this has been discussed many times here on the forum. To find old discussions that go back 10 years or so do a google site search: You type exactly this line into the search line
myasthenia plex site:dailystrength.org or myasthenia plasma exchange site:dailystrength.org
it will return all of the dailystrength posts or comments with the words on the left from the site.
Here is the myasthenia plex search results -- just click the link to see
https://www.google.com/search?q=myasthenia+plex+site%3Adailystrength.org&oq=myasthenia+plex+site%3Adailystrength.org&aqs=chrome..69i57.34299j0j7&sourceid=chrome&ie=UTF-8
Hope everything goes well!
Good Luck
Russ
in response to your question, plex is nothing but have your blood cleanded thru a machine similar to dialisis, it take about 5 days, then they will set you up for ivg therapy, all depned on your mg status, mine is mg-b4 extreme, so my ivg therapy was one year. which lasted for me 7 years untill my worst relapse.
if you can control your streess and other negatives it maylast longer, also you have to have a talk, with your neuro in regard of the dose of mestidone (piristigmine -generic name) and predinisone.
just be aware of the roller coaster that mg. is
any questions please ask,
best of luck
(fighter)
I am grateful that we have an outpatient apheresis center nearby and that my insurance will pay for everything. The apheresis doctor said that he can't guarantee that my double vision will clear up or even that it will become stable. Double vision is apparently the one MG symptoms that doesn't always respond to plex. Interestingly -- and this concurs with a discussion we had on this site a while ago -- the Dr. said that the apheresis will clear some of the blocking antibodies from my neuromuscular junctions; however it will take a while for 1) my body to become accustomed to the change and 2) for the damaged nerve junctions to regenerate.
I am looking forward to feeling better. :-))
- Nan
I understand perfectly what you mean with the veins, starting playing games, i am 79yrs. old and with all the treatmentss ect... my own veins are looking to skip town,
i just want to make a clarification. that most of the time gets lost.
when the plex is done cleaning the blood, by taken all the dead neuros they live your body with a debilitated function, because those neuros are needed to be present in your body and blood system,otherwise your body will be weeken,and all the others dificulties that you may go thru are the cause
THIS IS THE REASON THAT A GOOD NEURO WILL TAKE UPON HIMSELF TO ADVISE YOU OF THE NEED OF IVG.
as i told you at my prior answers, the amount of ivg therapy will depend in your classification of mg..
now please do yourself the bigest favor possible, check with DRUGS.COM,
the side effects of what the doctors give you and the over view. because cellcept,imuran.methtrelate, and manny others are used for transplant and and are not yo be ude with mg.
prednisone is only a corticoid steroid and the side effects are minimun with low dose. all the other conplication with mg are to be treaded with mestidone(pyristigmine) and unlowding the side effects drugs.
as i told you, this is a roller coaster that may take you sometimes in a very wild ride, but your are not alone, and with a tip here and there , and some sound conversation, you will be able to overcome certain problems,
best of luck (fighter)