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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-25-2018, 11:23 AM | #1 | ||
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Junior Member
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Hello all,
I am post-thymectomy (2016) and was asymptomatic for about a year, but this year my symptoms have come back to almost pre-surgery levels. I would like to be treated with Plasmapherisis (the only thing that's ever really worked for me) as a maintenance tool. My current MD suggested more drugs with more serious side effects. No Thanks. To those who have had PLEX: Did you have a port placed? How often did you receive plex? Were you able to have your treatments on an outpatient basis? The problem I am running into is that they are not able to get access for plex on either of my arms, so I had to be admitted and have a jugular line placed. My doctor will not recommend it as a maintenance treatment because I would have to get the line put in & taken out after every treatment. I have read that some people have used power ports, but cannot find enough info to bring it to my md. Thank you in advance for your all your help!! |
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