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...
So I’ve had Myasthenia gravis for about 9 months now and it’s been the hardest thing ever. I started off being admitted several times with no clear diagnosis, even after countless blood test. Then was referred to the leading hospital in my state when I was diagnosed using and EMG...and weeks later another blood test confirmed that I have Myasthenia. After that I was given ivig which didn’t work. Spend 2 months in the hospital for acute respiratory failure. Then another 1 in the hospital because I had to be intubate. With all that they decided to give me 5 rounds of plasma exchange which worked for about a month. Then I had another exacerbation about a month after and they gave me more rounds of plasma exchange, increased my prednisone and gave me cell cept. For 3 months all this worked for me so my doctor started slowly tapering me off the prednisone but just last week I got admitted again and had to spend another 12 days in the hospital doing the plasmapheresis. Now my doctor is recommended Rituxan to me but I’m apprehensive about the side effects. I was recommended a device called a vortex port which is a permanent catheter that would allow doctors to access my jugular vain and periodically give me plasma exchange instead of me having to be admitted all the time but my doctor blows me off every time I bring it up. I really need some advice on what I should tell him. Should I stand my ground about the vortex port or just try the Rituxan. Any advice is greatly appreciated.
in this blog, i would advise to read my blog (which i will enclose the site at the end i beleive it will help you on the course to follow, it is written by 2 neurosurgeons in neuro problems as ours, they are fron the university of philadelphia
read fro a to z to realy understand whath it is that we deal with
teh site is as follows.
http://ncbi.nlm.nih.gov/pmc/articles/pmc3726100/
best if luck fighter)
https://www.google.com/search?q=myasthenia+rituxan+site%3Adailystrength.org&rlz=1C1CHBF_enUS812US812&oq=myasthenia+rituxan+site%3Adailystrength.org&aqs=chrome..69i57.21822j0j7&sourceid=chrome&ie=UTF-8
Good Luck
Russ
I go to an outpatient apheresis unit for PlEx at at a hospital here in Pittsburgh, PA. If you live in a city, maybe there is one in your vicinity. Although I used to be plexed more frequently, I currently am undergoing PlEx every two weeks as supportive treatment while tapering Prednisone and waiting for Imuran/azathioprine to take effect. PlEx is amazing at reducing my MG symptoms.
Many of the patients who go to the outpatient apheresis unit here have MG. I myself do not need a port at this point but some patients do. The nurses at the apheresis unit are experts in determining who needs a port. So far the vein on the inside of my right elbow is holding up. As the nurses instructed me to do, the day before each PlEx treatment, I eat extra salt and drink a lot of water and don't have any caffeine. So far, so good. But some people just don't have good Plex veins.
I am hoping that someone with a port will chime in here with their experiences. Because you are prone to respiratory crises, it is especially important that you work closely with your neurologist.
- Nan
Not sure what else I can say except you deserve better. Doctors need to be sure and you need to be confident that the treatment plan will work!
Best wishes for peace,
TJ