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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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04-26-2010, 10:37 PM | #1 | |||
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Just saying Hello, I dont know why I just thought about joining a forum with people who know the struggles of MG. I am 24 and i was diagnosed back in 2005/06 . I pretty much blew of my diagnosis because i was fine for the most part until last year i had a crisis and i was hospitalized over a month I am currently on prednisone & mestinon .... My doctor wants me to start cell cept which im not really sure about. I went from rarely being sick to having a cardiologist, pulmonary doc, and a neurologist anyhow I am grateful to still be ticking .... Thanks for reading
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04-26-2010, 10:58 PM | #2 | ||
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"Thanks for this!" says: | diva.baby (04-26-2010) |
04-27-2010, 01:03 AM | #3 | |||
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Hi and welcome,
sorry you are going through all this. I know what you mean about being helthy then visiting heaps of doctors. There is a thread about cellcept, which I will bump up for you, if you've got any questions about it, just ask, we are a friendly helpful bunch here Kate
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Outside of a dog, a book is a man's best friend. Inside of a dog, it's too dark to read. Groucho Marx |
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"Thanks for this!" says: | diva.baby (04-27-2010) |
04-27-2010, 07:52 AM | #4 | |||
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Divababy,
Hi and welcome. I see Redtail posted what I wrote about cellcept so you could see it, thanks Redtail. I have had some very extreme side effects from it. I too am on pred and Mestinon. When you read the post you can tell that some people have done well on it and others haven't. I think the most important thing is to pay very close attention to any side effect so you can pinpoint it to cellcept. My worst side effect was chronic memory loss. I would consider it demensia like. I also had insomnia, night sweats and a constant feeling or anxiousness and shaking in my hands. I was not aware that memory loss was a side effect until I contacted my neuro so just be sure to let them know about anything that seems our of the ordinary if you decide to start it. I feel for you in having to make this decision. I filled the RX and let it sit for 2 weeks before deciding to give it a try. I have had malignant melanoma in the past and was terrified of getting it again from cellcept. Sometimes I wonder if the horrible reaction I have had to it is Gods way of telling me that I should not be on it. I wish you the best and hope you find a treatment that works for you whether it is cellcept or something else. Kendra |
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"Thanks for this!" says: | diva.baby (04-27-2010) |
04-27-2010, 08:05 AM | #5 | ||
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Hey Diva Baby,
Welcome to the group! You will like it here. As you can see any questions you have will gladly be answered. I was diagnosed in 01 and only take Mestinon, so I can't help with any cellcept guestions. Hope you do well on it and keep us updated. Take care. Hugs, Pat |
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04-28-2010, 09:26 AM | #6 | ||
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Welcome Diva Baby! I have Ocular MG and am on Prednisone, CellCept and Mestinon. Weaning down presently on Prednisone! Yeah! I started CellCept after Infuran didn't work (bad side effects). I have night sweats, some memory loss which I thought was due to my age (60) hee! hee! but don't know of any other side effects. I am on 2000 mg daily. I have had so many side effects from the Prednisone that it is hard to tell if any are from CellCept. All I know is that the combination of Prednisone and CellCept got my double vision under control to some extent. When I added Mestinon a month ago the double vision almost went away completely! I wish you the best and pray for you to make the right decision for you. Kathie |
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"Thanks for this!" says: | diva.baby (04-28-2010) |
04-28-2010, 09:57 AM | #7 | |||
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The memory loss is a big Problem for me !!! I will be in school and i cant afford to have memory problems
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