Leora Diana
Forum Replies Created
-
I was diagnosed in the summer of 2010 with drooping eyelid, fatigue and double vision. A tumor was found on my Thymus, so making the decision to have the surgery was relatively easy. I had my Thymectomy 2 months later. My tumor was benign and I had no symptoms again until 2018 with trouble swallowing, double vision and muscle weakness. I lost 28 pounds in 1 month. After 3 IVIG and Prednisone for a few months I was put on CellCept and Mestinon which I continue to take. My symptoms are manageable and I do not regret my surgery. Recovery for me was stressful for the first couple weeks but I recovered within 6 weeks and was back at work. Good luck.
-
Hello. I was diagnosed with Ocular MG the summer of 2010. I had the Drooping Eye Lid with Double Vision. My ophthalmologist immediately sent me to a neurologist who after testing discovered a tumor on my thymus. It was recommended that I have it removed soon due to my age of 55. I believe I was told that the surgery wouldn’t be offered if I waited too long. I woke up from surgery and immediately felt better. No vision problems and the tumor was benign. I had a great recovery and no symptoms until 2018. I was hit hard with slurred speech, swallowing problems, paralyzed tongue and lost 28 pounds in 1 month. Received IVIG infusions for several months and was on prednisone for about 6 months. Now, due to fatigue and overall muscle weakness, I take a low dose of Mestinon once a day along with Cellcept morning and night. I am grateful that I had a tumor since it forced the decision to have the surgery. I don’t know if I’d of had it done otherwise. Overall it was a good decision.
-
Unexpected
Annoying
Unpredictable
-
<b>Hi. I was diagnosed in 2010 with a droopy eyelid and double vision. Initially went to my ophthalmologist who sent me to a neurologist who diagnosed my MG. I had a benign tumor on my thymus so that was removed within a couple months of diagnosis. Literally the moment I woke up from that surgery there was no double vision and no eye droop. I had a relapse in 2018. Tongue swelled, slurred speech, trouble swallowing. Lost 28 pounds in less than 6 weeks. I was given a set of 3 IVIG infusions with no side effects and complete success as all symptoms went away. The first infusion resulted in my feeling like I was a whole new person. More energy than I can remember ever having. I am not athletic in any way, but I felt like I could run a marathon! The 2nd was fine, and I still had the, “Whole new me” feeling. By the 3rd, I was still fine, but was back to feeling like my old self, which is fine as long as I don’t ever get those symptoms again! I have to say, I wish I could still get infusions, with the hope of feeling that good again, but instead I take Prednisone and Mestinon every day and only suffer from muscle fatigue if I overdo things. Hope I am able to stay this stable from here on out. Best of luck to everyone in dealing with this strange disease. At the very least, it’s an interesting journey. </b>
-
Hello. I had the Pfizer shots back in March and the Pfizer Booster a couple weeks ago. I am taking Mycophenolate and Mestinon daily and have been since January 2016. I had my antibody count checked via blood work a day after my booster and I showed a count of 11 while my healthy husband showed >1400. Neither my neurologist or primary were surprised by the low count, but I was disappointed. My primary explained it this way.
”Unfortunately there is not enough data to be able to reliably say a certain titer level is associated with a certain level of immune protection. The immune system is more complex than antibody levels drawn at any given time. Your white blood cells store the memory of the antigen as well and become antibody factories once stimulated by a pathogen. This wouldn’t appear in a blood test”.
Hopefully when I check again in 3 months, my count will be better. Feel like I am avoiding land mines every time I turn around with COVID and the ever changing information out there.
-
Hi Tom. I also am doing the free antibody testing here in TX. After my booster my first antibody blood work showed >11 while my healthy husband showed >2500. This is all very interesting. Anxious to see what the next blood work shows in a couple months. Wishing you well.