Journal Entry for April 25, 2009
April 25, 2009 11:12am
Goal Completed on Apr 25, 09
Nandid
9:43am, March 24, 2009
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About Me
Nandid
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About Me
I'm a stay at home mom of four and was diagnosed with Myasthenia Gravis in July 07. had thymectomy in Dec 07 felt really good until Dec 08 had a allergic reaction to Cellcept. Went back to prednisone and i am back feeling good. Am interested in having more children and am currently looking for a very understanding neurologists the one i have is a complete joke.
I'm a stay at home mom of four and was diagnosed with Myasthenia Gravis in July 07. had thymectomy in Dec 07 felt really good until Dec 08 had a allergic reaction to Cellcept. Went back to prednisone and i am back feeling good. Am interested in having more children and am currently looking for a very understanding neurologists the one i have is a complete joke.
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Well guess it was fun while it lasted
February 10, 2009 1:00am
Well anyweay so here i am. i haven't been on the computer for so long i forget what it was LOL. In december i had an allergic …
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I pray for all of you who are having to deal with this awful disease , but I'm not hearing a lot about the plasma exchange usually when IVIG doesn't work the Plasma exchange is given , I just know that's what they would do for my husband and it worked better. Neuroligest took him off of mestinon because it was lowering his heart rate , Drs said he could live with out it but would still have to have cellcept , prendison, IVIG's and every how and then Plasma Exchange . Best of luck to every one of you , I wish I could help everyone of you, I hate this MG it took my husband from me , but I'll never give up fighting it. Love to all hang in there till you get the right meds to help you . KAT
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Rainbow
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Hang in there Nandid. I can relate to your issues with your spouse. My husband had a tough time understanding what I was going through. I am a stay at home mom and I can tell you that when my husband would come home from work, I would dread seeing his face. If I was having a bad day, he had no problem showing his fustration. It finally took for him to run into a person who is caring for a son with meningitiis that we know and caring for her husband who was injured at his place of employment. She was a blessing from God and I can tell he is trying to be more understanding. I guess trying to understand that you have no control of what your are going through is not easy for our hubbies to understand. My husband is a "I can fix anything" type of man and this is something he cannot fix.
Santa
Happy Holidays Nandid, hope your health and that darned MG is better. Boy it is tenacious, May your holidays be so much more special, knowing how precious they are for people like us, lucky to be present in the lives of our loved ones, not in the state of sleep, which is a myasthenics real fate. I feel extra grateful to have my life during the holidays. Enjoy your baby and know that God made you the perfect mom for her, in every way. Blessings and Joy, Tara
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Support Groups
Close Myasthenia Gravis
I was diagnosed with MG in July 2007. I had it so severe that I could hardly do anything. i had a thymectomy Dec 4th and went into spontaneous remission. i have a mild occular form of MG when i get sick. I suffer from cronic broncitis and if i don't keep that under check i have mg symptoms in my left eye. other than that i can take long walks, drive again, play with my kids, and do all the things that MG had stole from me before my surgery.
Treatments
- IVIG Not Working
- i have had two ivig's and neither has lasted longer than 3 or four days. spending five days getting a treatment that helps for three or four days isn't worth it
- Mestinon Working / Worked
- i only take it when needed now. Compared to mega doses before my thymectomy
- Thymectomy Working / Worked
- I had spontaneos remission. I feel awesome.
- Cellcept Working / Worked
- my dr is replacing my prednisone with this glad to get off the prednisone.
Close Parenting Newborns & Infants (0-1)
i have a seven month old baby girl. She is rolling everywhere and trying to sit up.. She is wonderful and so full of energy, but because i am diabled with Myasythinia Gravis i have hard time keeping up with her energy.
Open Parenting Teenagers (12-18)
i have two teen girls ages 13 and 14. They bicker all the time over trivial things. They yell at the top of their lungs and since their is a new baby in the house baby doesn't get the sleep she is suppose to get during the day.
Treatments
- Patience Working / Worked
Open Parenting 'Tweens (9-12)
i have a ten year old boy. He is wondeful when it comes to helping around the house. hr dearly loves to watch his baby sister so mom can get things done around the house
