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.
MG is so peculiar I have learned to doubt nobody's experience. It may be that the hormone involved has some unknown benefit, at least for you. Research is so terribly limited because the 70,000 of us sufferers are not enough to justify the necessary funding. The important issue is symptom relief, and I cheer you for finding a personal solution and wish you the best.
You mention vertigo as one of your symptoms, but every neurologist will tell you it has nothing to do with MG. But it does, and it is a commonly reported symptom. I suffered vertigo for years until I discovered the real culprit was my occasional neck weakness, which caused my head to flop when I laid down. The flopping dislodged the stones in my inner ear. I learned to be careful with my head during periods of neck weakness and have never had vertigo since, not in four years. We all sort have to navigate our own way through this crazy autoimmune journey, and we will each have a different story.Thanks for sharing your experience! It is great that you have had so many years of success with the Mirena IUD.
It’s important for us to note that while this treatment may work for some, different people may respond differently.
It’s best for people to discuss their options with their doctor and/or specialists before trying anything new. Thanks again for sharing, I’m so happy for you, and I hope it continues to help you! 😀
Warmly, Chelley (Team member)I forgot to tell you that I had the Mirena from 30 years until 38 years and then from 39 years until 46 years. So that's a lot of Mirena experience with the MG. And during that time, I had just little impact of the MG.
