cindylee
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| Gender: | Female |
| Blog: | www.autoimmune-cindylee.blogspot.com |
| Birthdate: | 09/14/1953 |
| City: | Bellevue |
| State: | Kentucky |
| Occupation: | Lifecoach |
| Online Status | OFFLINE |
| Member Since | 07/05/2008 04:34:29 |
| Last Online | 11/29/2008 12:33:54 |
| Rank | Member |
| A little about me: | Diagnosed with MG Oct 2007 Born and raised a southern gal..in SC Currently on Mestinon...4xdaily Waiting for decision about treatment plan other than Mestinon Mestonin helps mainly with vocal chords, neck muscles and eye/face drooping Very limited physically and spend most of the time in my apartment,but have many enjoyable passtimes. BA Psychology and Counseling Certified Life Coach Writer Artist Divorced and mother of two grown children Hospice Volunteer I love to read, write, spend time with family and friends and watch old movies and being kind to my body. My favorite authors are southern...love historical novels and inspirational writers. |
My Hugs
 | Hi Cindylee, How are you? How have you been feeling? All is good here. No answers though. I have recently been taking Magnesium and Malic Acid and have much more energy. I read about it a couple years ago and tried it then. It does improve my burning muscles and fatigue quite a bit! I don’t know why I stopped taking it but I just started again and it really does help. I just had a rheumatologist tell me she doesn’t think I have Fibromyalgia which I always thought I had a slight case of. The Myasthenia Gravis is diagnosed I think…depending on what doctor you talk to. I just have so many odd symptoms …no answers. The doctors keep asking me what the other doctors think. I am not sure who is supposed to diagnose me, the rheumatologist or the neurologist? That’s it in a nutshell. Let me know how you are doing! |
| Hello, My heart surgeon had only preformed 4 of these surgerys ever!!Talk about trust..ha My plastic surgeon had to call the head of coding in DC because he had no idea what to file my surgery under bc it is so rare. Yes, I have an amazing team behind me. I have definitly lived my life to the fullest and will continue to do so. Do you know know why stress causes MG to flare up more? The A drug you asked about is a replacement for cellcept. Cellcept gave me really bad headaches and caused me not to sleep well at night. What kind of treatments are you doing right now? Drugs? plasma? |
 | No there was no growth on my thymus. My thymus was not enlarged or anything. I got the surgery only 2 months after finding out i had MG and I only had symptoms for 6 months prior. I guess I was lucky to find out so soon, I have a great team behind me. I feel for you and your 20 year long search. I was really scared to get the surgery (never had major surgery before). I had a heart surgeon and a plastic surgeon with me. There are 4 ways to do it. Typically they cut you in the center of your chest from your neck to the bottom of your breast. You would have a really ugly scare, because im so young my doctors wanted to cut me underneath my breast so you cant see any of my scares:) Its a very rare surgery, its practically like open heart. My plastic surgeon was there to make sure everything was put back in place. Everything looks the same just have a scare underneath. My insurance covered all but 10 percent of it. I feel amazing.. I feel as normal as I possibly can before any of this ever happened. I know ever MG case is different but it really helped me and I recommend it if your not feeling better. You just have to trust your team! I also had plasma treatments which helped..How long have you been on meds? |
| Have you thought about surgery? |
| Hi Cindylee, How are you? In a nutshell I have been really struggling with fatigue, MRI was normal, double vision is same or worse and I stopped taking the Mestino because it seemed to make the double vision worse and I was wondering if it was contributing to my fatigue. I bet my Neuro Opthamologist will be upset that I stopped. Oh well. I went in last week for an emg and nerve conduction test which I am sure you have had. I asked her half way through how the mestinon (which at that time I was still taking) would effect the test and she gave me this look and then apologized for not telling me I should have stopped taking it 12 hours before the test. I have to go back in and do the whole thing over. Oh well. How have you been? Jennifer |
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My Diary
| Diary Description: | Thoughts, insights and revelations that will ultimately free me from my own prison of pain and suffering. Words that uplift, words that purge the soul, words that encourage, words that heal. This empty page is my witness to pain....my witness to joy. | ||
| Diary Statistics: | Total entries: 1 | Total comments: 0 | Total combined hits: 86 |
| – Tuesday, July 22 2008 – | |
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Articles for Healing
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My Forum Posts
| Recent Forum Posts | |||
|---|---|---|---|
| Date | Subject | Category | Hits |
| 07 November 2008 | Leg Pain from Mestonin | General & Support | 366 |
| 26 August 2008 | Just Diagnosed | Introductions & Personal Stories | 289 |
| 26 August 2008 | Just Diagnosed | Introductions & Personal Stories | 289 |
| 25 August 2008 | Just Diagnosed | Introductions & Personal Stories | 289 |
| 25 August 2008 | Just Diagnosed | Introductions & Personal Stories | 289 |
| 25 August 2008 | Gave Out of Steam | Introductions & Personal Stories | 43 |
| 25 August 2008 | Just Diagnosed | Introductions & Personal Stories | 289 |
| 25 August 2008 | Things to Remembered | General & Support | 82 |
| 25 August 2008 | This is odd, but I have to ask... | General & Support | 176 |
| 25 August 2008 | Just Diagnosed | Introductions & Personal Stories | 289 |
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