My story with MG for the last 41 years and how I feel a lot better with Mirena anti conception

Hi there,

I hope the information I share today will help at least one person a bit further. And if you have any questions, please feel free to ask me about it.

When I was a child, I suffered a lot from leg cramps, often at night. Regularly in both legs at the same time. They couldn't find anything strange. But when I was 15, I developed severe loss of strength in my muscles, making everyday tasks suddenly very difficult, like climbing stairs, combing my hair, turning a key. I experienced a lot of sudden loss of strength, especially in my arms and legs. I underwent tests for over more then 15 years and even biopts of the muscles, and nothing unusual was found. I quit smoking in my 20s. That already helped somewhat with the sensation in my legs. I had more strength there (perhaps more oxygen?). When I turned 30, the symptoms suddenly became manageable and significantly reduced. It turns out that I had the Mirena IUD inserted at that time, but because I didn't know what I had, I never connected the two until this year. Before that, I was using the regular pill (various types) and the injection, and I hadn't noticed any change before. When I wanted to get pregnant, I stopped using the Mirena IUD. After my pregnancy, about four months into the recovery period, I woke up with double vision. I also suffered a lot from vertigo and my balance. I had trouble breathing and regularly felt short of breath. I also had difficulty swallowing, keeping my eyes open, and bladder problems. These symptoms lasted about two and a half weeks before temporarily subsiding or even disappearing. I stille didn't connect this with my period. Until the next round. Finally, after 38 years of searching and all sorts of tests, it turned out I have Myasthenia Gravis. That was 8 years ago. As a teenager, it mainly affected my arms and legs, and now it mainly affects my face, bladder, and breathing. unluckily I experienced many unpleasant side effects from the Mestinon, so I continued my search. Around that time, I also had a new IUD inserted, and sure enough, the symptoms subsided dramatically after a month. Last March after 6 years, the IUD had to be removed again, and all the problems with my eyes, extreme fatigue, arms and legs, bladder, etc., all started to flare up again. So now I'm having the Mirena IUD inserted again, and along with extra vitamins, it seems I'm getting it under control. So I really think due to my experience for the last 41 years, that the Mirena IUD helped me a lot. It seems to give me a stable hormone balance, which seems to have a significant impact on my MG. This wasn't the case with the pill and the week off. Now, with this small amount of hormones in the right place, I experience far fewer symptoms. So, who knows, maybe this can help you too. The insertion is unfortunately painful, but for me it was more than worth it, and with the right guidance (hospital instead of a GP) and the equipment, it was manageable. In the Netherlands, you don't get any anesthesia for this, and they insert the IUD in the uterus, but then it's done for eight years (it used to be 5 years but it's 8 years now although I experience more MG after 5/6 years but it goes really slow). I hope by sharing this information, I can help out a bit. Good luck! And thank you for taking the time to read this.