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I am a 32 year old woman, and I was diagnosed with LEMS about 3 months ago. I started having weakness in my lower limbs about 9 months ago (April 2006)....about 3.5 months after having my first child (she will be 1 year old on Dec. 2...Happy Birthday Isabella!). I think the stress on my body from the pregnancy and going back to work full time may have brought out the disease at that time. At first, ignored the symptoms, blamed it on fatigue from work and the baby, and was just getting over a flu-like illness. But after about a month, I realized something was truly wrong! I could not roll over in bed, or get out of a seated position, or get up the stairs without my husband sometimes physically carrying me. It took months to get into a good Neurologist who first diagnosed me with Myasthenia Gravis based on my EMG, and Myasthenia Gravis was also confirmed by a second Doctor with a Single Fiber EMG. So I lived tinking I had MG for about a month, and then I came back positive for the LEMS antibody and my whole life seemed to change yet again! At that point, I had learned EVERYTHING about MG, and now I have to learn all over again with LEMS. The thought of cancer scared/es me to death. So far, I am cancer-free (Thank you lord). My Doctor seems to think I have AUTO-IMMUNE LEMS...but I will be on High-Watch for cancer for a LONG time. I am on Mega-doses of Prednisone. I feel like I look like a monster. Once this pretty young girl, singer in a band, great job that I loved....now I don't even recognize myself in the mirror. The drugs are making me crazy- I have the worst mood swings-ups and downs...I feel so bad for my husband, he has NO CLUE what I will be like from one minute to the next! Luckily, he is the most supportive person in the world, and has helped me through so much. This profile seems like a "downer", but believe it or not, I am able to keep a pretty positive attitude most of the time. I am thankful for all I have—great family, wonderful home, and lots of LOVE surrounding me. I just started on a drug called IMURAN, and my Prednisone os being tapered...right now I am on 60 (High Dose) one day, and 45 (Low) the next. And every 2 weeks, we will lower the Low Dose by 5 MG. So far, I am still Crazy from it, and since the IMURAN won't kick in for about 3 months, I am actually becoming pretty weak again. I will be taking a trip to the MAYO CLINIC in Rochester, Minnesota soon. I am just waiting for my Doctor to get me the appointment. He feels they may be able to offer me more tests, or maybe be able to get me that DAP drug that is not approved by the FDA here in the US. They are petitioning for it for me here, in Connecticut, but may not be able to get it for awhile, if ever. Does anybody have a similar story to mine? I'd Love to share!! Any advice for me...as somebody who is in the beginning stages, trying to cope? I'm so frustrated...its not just the physical aspects of the disease that LEMS patients have to deal with...there is sooooo much more: Emotional, Mental, Financial, etc. Will there eventually be some control? Again, I am so thankful for all I have, and this is just a bump in the road in this thing we call life. I WILL get to a point where I can have "normal" days...I MUST! For my family....and me!! Thanks for taking the time to read my profile!
Best to all,
Shannon
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