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About Me
mara811
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About Me
I'm an architect in Austin. I'm 27 years old and I live with my husband, who is a computer programmer. I have 5 siblings who live near-by and they are a great source of support. I am an intellectually curious individual who prefers to fix problems rather than get upset by them.
I'm an architect in Austin. I'm 27 years old and I live with my husband, who is a computer programmer. I have 5 siblings who live near-by and they are a great source of support. I am an intellectually curious individual who prefers to fix problems rather than get upset by them.
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Thanks for your info and advice! It's really helpful and much appreciated. KIT
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Hi "mara811." Your message was one of good info, good common sense, and lots of hope. I just joined the group. My sister (age 62)has been dealing with MG for one year; severe form with 3 major crises, heart pace maker put in and even a temporary colostomy. She could not focus, could not swallow, could not stand up, could not write, etc. BUT after three hospital stays and physical therapy,IgIV treatments and stomach feedings, she is improving. She phones me daily, she can drink liquids, she can see well, she can take care of most of her own needs. She kept "the faith" that MG is not a death sentence and that patience and self education can make a huge difference. A good support system is a must; but positive attitude is even more important. There is an actress on "Days of Our Lives" that I believe had MG diagnosed at an age as young as yours (in 1960s or early 70s); she is still acting on the show and works around the down times ... a lovely women and inspirational! Best of everything to you! I hope your up times are many and down times few. oldlady_bee
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Thanks for the info! Good luck with the Imuran I wish I could take that I have heard some really good results!
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HI Maria...Im new to the group and I really thought tht your letter was such a great idea. Looking at the positive is important..its easy to think of the scary or negative things about mg..but cant hurt to talk about some good stuff too...so glad your doing so well...thats wonderful...nightingale924
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Support Groups
Close Myasthenia Gravis
I have had myasthenia for over a year. It started getting really bad (in the scary range) last summer. I've been treating it very aggressively and I am able to live my life normally again. I also have a thyroid condition that showed up at the same time as the MG.
Treatments
- Azathioprine Too Soon to Tell
- I started taking Imuran in hopes that I will be able to stop taking prednisone. So far, I am taking it well and I think I have noticed some improvement. I've had a little bit of dizziness, bot other than that I haven't noticed any side effects.
- IVIG Working / Worked
- The first few rounds of IGG made me feel a bit like I had the flue for a couple days, but it definitely works. Now, I get IGG every 3 weeks and I only feel a little tired directly after the treatment. Once my illness got really bad, this was the saving grace that made me able to return to work and do the basics again. It's expensive and time-consuming, so I hope to not have to do it forever. But there are very few side effects that last longer than a day or 2.
- Mestinon Working / Worked
- Mestinon was like the magic pill I dreamt of at first. The problem is that my MG kept progressing and it wasn't good enough after a while. I take 60 mg every 3 hours and I also take 180 mg of Mestinon timespan before bed because it got so bad for a while that I had trouble dressing myself in the morning. With the Timespan, it was still active when I woke up. Now that I'm on Prednisone, I think I could get away without taking the Timespan, but I would rather get off the prednisone first.
- Prednisone Working / Worked
- Prednisone is a double-edged sword. It has worked better than anything else I have done, but the side effects are terrible. I've had water retention, weight gain, bad skin, insomnia, increased blood pressure, concerns over bone density loss, and now mood swings. The mood swings are scary. I've been slowly reducing the dose for months now and the side effects have reduced significantly. My plan is to get off it once the Imuran takes effect.
- Thymectomy Too Soon to Tell
- I had a thymectomy in October 07. I did not have any abnormal tissue, but I am hopeful that I may see results after a year. The surgery was easy and successful, but was extremely weak afterward. For the first time, I had trouble standing on my own, and I fell several times trying to climb stairs. After about 4 weeks, the steroids kicked in and I re-gained strength very quickly.
