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About Me
NicoleTempest
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About Me
I'm 26, married and my son just had his first birthday! Trying to learn how to cope with myasthenia gravis...it has changed every part of my everyday life.
I'm 26, married and my son just had his first birthday! Trying to learn how to cope with myasthenia gravis...it has changed every part of my everyday life.
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Journal
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Hugbook
Flower
hello..how are you felling today..i'm good..my legs are bothering me a little..i walked @ the dog park yesterday with the dog, then taught are in my kiddo's class for an hour & ended the day walking around home depot..think i did too much LOL..anyway wondering how you are..hugs liana
Prayer
i send you prayers and let you know im here for so feel free to talk when ever you would like. i was also wondering if i were to have a kid what are the chances of them getting MG?
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Hug
hey..i read your post & will write more back to you re: the thymus stuff..glad to hear your story, but it's getting late & i'm soo tired so i'll write ya tomorrow...
I’m With You
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Hug
hi nicole..welcome..and i hope you are feeling better each day..i still haven't gotten my thymus out..was dx with mg in may 06..i don't have a thynoma, but a remnant & the surgery freaks me out..since you have had your not long ago, maybe you can share :0) thanks & nice to meet ya...liana
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Support Groups
Close Myasthenia Gravis
Diagnosed with MG 12/07 after having severe double vision, migraines and neck weakness for 6 months. Began having weakness in elbows and knees 3 months after visual symtoms began. Had respritory issues for 18 months. Had Thymectomy 2/21/08. Have had some difficulty swallowing and breathing since. (Very scary!) Mestinon was miracle drug for vision. Still have slight double vision when lookingin certain directions. Can't wait to get this disease under control and into remission.
Treatments
- Mestinon Working / Worked
- I had severe double vision for 6 months before I was diagnosed. It took a pill in a half to work and my eyes began to work together again. I still have slight double vision in certain directions. I started on 1/2 pill (30mg) 3 times a day, now take 1/2 pill twice a day, whole pill once a day. Many side effects in beginning, just a few now...nothing like seeing again and making eye contact.
- Prednisone Working / Worked
- Just started 1 week ago for difficulty swallowing and shortness of breath. Started on one 10mg pill/day for 1 week then two 10mg/day. Swallowing seems to be better. Still feel like Im not getting enough oxygen and have shortness of breath a couple times a day.
- Thymectomy Working / Worked
- I had an enlarged thymus gland. Since I'm younger and on the healthier side my family and I decided this would be best to do sooner than later. I had a sub-mammory thymectomy on 2/21/08, which is where my skin was cut under my breasts and then my breatbone was cut vertically to minimize my scar. It is healing wonderfully, but I am still in pain. A couple weeks after I started to have some difficulty swallowing and shortness of breath. Just started prednisone. Hopefully it will get better soon.
- Plasmapheresis Working / Worked
- I got 5 treatments for 5 days straight. I got SEVERE migraines during and after treatment. While getting the treatment the migraines were coming on b/c I was recieving plasma too fast. Still didn't fix migraines for after. I don't know if it worked...I started up new medications at the sam time. Don't know what's what.
Close Parenting Toddlers (1-3)
My son just turned one 3/15. This is my only child and everyday is something new and wonderful. No really bad habits....yet!
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