Sunday, December 2, 2012

Diagnosis

Hi everyone. I'm starting this blog to keep my family and loved ones updated on my health and to spread the word about all the side effects that are not disclosed to the patients, only to the doctors about the mirena. Let me first say that some of my symptoms are very personal so please be sensitive while addressing them.  For the past ten years I have been through hell. I knew all my symptoms started after my son (second child) was born. I was 22 years old. It wasn't until several day's ago that I connected my symptoms to the iud. Realizing that my symptoms started shortly after he was born, all of a sudden I realized, oh that was when I had the mirena inserted, in October of 2001, six weeks after the birth of Isaiah. I remember my first symptom like it was yesterday. I was sitting on the floor changing my new born and felt this buzzing feeling in my left foot. It would do the buzzing feeling every several seconds. It would last for hours at times. It would be so annoying that it kept me up at night.  I remember thinking how strange this feeling was to me. Shortly after that I started to have symptoms of my heart.  I had chest pain, and felt my heart racing incredibly fast and felt as if it would jump right out of my chest! I was alarmed and made an appointment with my primary care doctor. All he said to me was, your young and healthy and probably just stressed. He didn't test me for anything just sent me out his door.  As I started having other symptoms such as tingling in my legs, weakness in my arms did I search for help from another doctor. I wish I could say that I only had this experience once, but I didn't. Over the next several years I saw doctor after doctor who would do the same thing, tell me I was young and healthy and probably just stressed without doing any tests. I went several years more with my symptoms piling up. In 2007 I had my mirena removed at the five year mark. Jose and I weren't totally sure if we wanted a third child so we decided to use other birth control over another iud at this point. Within a few months I became pregnant with our third child Payton. Looking back now I can remember feeling better before and after I got pregnant (when the iud was out.) But after having Payton six's weeks later I decided on getting another mirena instead of my tubes tied. Which has caused me several more symptoms and searching for answers. 
   I've been telling people for years that I thought all my symptoms were all connected and I feel like my body has been attacking itself.  I have had almost every symptom you can think of. Forgive me this list is long. As I stated it started with a sensation in my left foot that felt like buzzing. I started having chest pains, heart beating fast or felt like it was gonna jump out of my chest. I have horrible migraines, both visual and headaches. One mimicked a seizure and lasted for two weeks. . I started first with the visual. In about 30 minutes my vision would become very blurry and shimmering. I thought I was going blind. Then it would pass as quickly as it came.  Ive had this happen several times, even while driving. I have had tingling everywhere imaginable. My feet, legs, stomach, vagina, hands, arms, head and face. I have had weakness in my arms and legs, I have dropped things because of this. I have to tell myself often "lift your leg and take a step" because my legs felt heavy and weak. I have pain in my legs, arms, chest, hand, feet, toes, finger the worse by far is my back. I have a pain in my lower back on both sides  that feels like its deep in my bones. I am on medication for this pain, I've had to do physical therapy three times with no relieve, injections that haven't helped, massage therapy, acupuncture, and been to a chiropractor. None of these have ever given me relief, although the pain meds take the edge of the pain. It has been so severe that I can't walk at times.It had to come to the point of wanting to die instead of going one more day with this pain, in order for me to seek help. The pain in my hands and wrist have effected my daily life from brushing my hair, washing dishes, driving, and picking things up. I've been told it could be carpal tunnel. I have felt muscle twitching, stabbing pain and numbness all over my body as well. One time my legs felt like they were on fire. When I exercise or I'm out in the sun my legs have this all over buzzing feeling. I have swelling in my left breast, plus swelling of my legs, ankles, feet, hands and arms. I have this itch that no matter what medication I have tried it doesn't go away. I have scratched my skin raw because of it. I have had hives on my ankles and arms. I started having issue with food. I couldn't eat anything without my stomach hurting to the point that I stopped eating. I was diagnosed with IBS and having candida. For over a year I only ate one very small portion of food everyday, because I knew I had to. But I had absolutely no appetite. I lost over 70 pounds. I had to change my diet to only organic meats, brown rice, water and some vegetables, nothing else. This helped tons with my stomach issues, but not any of my other symptoms. I was put on lyrica for my pain and gained all my wight plus more back. I stopped taking lyrica about a month ago cause it was not helping with my pain. I had cysts in my left ovary that caused me so much pain that I stopped working out. I was told they were blood filled and I just had to let them clear up on there own.  I have acne on my face, neck, chest and back. I have a dry mouth, with lack of saliva. If I don't have a drink on hand while eating I get the food stuck in my throat and start to choke. My teeth are starting to be effect, I have so many cavities and genitives eating away my gums. Before I got sick I had perfect teeth. I have had constant canker sores, several at a time even on the back of my throat. I have loss of sex drive(which I figured was due to having babies and taking care of small kids), pain during intercourse, even sores on my vigina. I have suffered with severe heartburn and indigestion. I become so bloated that I look like I'm at least six months pregnant. My breast have hurt and I had lumps in my right breast. I have had yeast infection, candida and thrush. Also have had bladder infections. I have foggy brain, where I can't remember things in my past, miss appointments, and struggle on words. I always wanted to be a mom and worked with kids and LOVED it, but have become irritable and moody with my own kids. 
  I'm sure I am leaving things out and will post them as I remember. I have seen every type of doctor there is.  Its only been about the past 4 1/2 years that I have finally been listened to. I have been tested for everything under the sun ms, lupos, lyme disease among several others. Each new doctor going the route of ms, but all my test always come back negative. They would still tell me that I could have ms for decades before a lesion ever shows up. Not one of these doctors every told me that  this is due to the iud. Even though all of them have asked what type of birth control was I on. I wish I was armed with this information years ago, I would have never gotten my second mirena inserted or suggested it as a good birth control to other woman. The clinical trial for the mirena only had a handful of woman, with minimal side effects. Now that it has been at least 10 years since the mirena has become popular have all these other symptoms been recorded. The maker of the mirena, Bayer, does give a list with all the symptoms on the doctor's pamphlets, but only list about four on the patient pamphlets.  
  I feel like I have been robbed of my past ten years and my children's childhood.  I want to be apart of spreading the information on the mirena and its side effects, I'm going to be very active in this. I am calling my ob first thing Monday morning to have this iud removed asap. Please consider doing your own research if you have or are thinking of getting the mirena. This is only the beginning of my recovery, it will be aa uphill battle until all of the hormones leave my body after having it removed. I will keep you posted on my progress. I know that because of my faith and knowing it has always been in God's hand is one of the reason's I haven't completely gone insane. That and because of Jose and his support through these last ten years, even when no one else would believe me he would tell me that it is my body and only I know what its suppose to and not suppose to feel like. He has always believed me and supported me the best way he can.


I already remember two symptom's I have left out. I have major fatigue, to the point that I have almost fallen asleep while drive. It's like my eyes are extremely heavy and I can't keep them open. It is only by the Grace of God that I have not injured myself, my children or others while having this fatigue and driving. Even after telling doctors about this symptom, nothing was done. Also I have felt on and off over several years the "fluttering" feeling you have early on in pregnancy, I have bought countess amounts of at home pregnancy tests and even had a blood test done several months ago with all negative results. Both of these symptoms are also recorded from other mirena suffers, just like all of my other ones. Praise God that I finally have a name to what is wrong and can finally fight it with the best solutions.

12 comments:

  1. Melissa, So sorry you are going through this! I HATE the Mirena and the way the Drs push it! Here is a link to my own Mirena story. I have been Mirena for two years in January, and though I still struggle with occasional anxiety pretty much all of my symptoms have cleared up! Love you lady and hope they can get t out fast! Email me if you have any questions!
    -Sarah
    http://thechanceys505.blogspot.com/2011/01/my-mirena-story-cautionary-tale.html

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    1. Sarah,
      Thank you for sharing your mirena experience here on my blog. We still need to get together, let me know when you are available!

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  2. Hi Melissa! So sorry to hear about all of your symptoms. I'm glad that you've decided to start a blog to tell other about it. It will help. Here's my Mirena story: http://www.learning2walkagain.blogspot.com/p/my-story.html

    Keep the faith! Look forward to reading more from you!

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    1. Thank you for sharing your story with me as well Denise. I got you linked up on my blog, thanks for the information on how to do that!

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  3. Hi Melissa, I am also so sorry you have to live with this. I myself have a mirena horror story.You can view it here http://4boysforme.blogspot.com/2013/01/my-mirena-nightmare.html I encourage you to link your story in my comments so more stories are out there on how this mirena ruins and takes over lives. I was also wondering if you heard of a hemiplegic migraine? I have had 2 of these in the past year, and by the way you described some of your symptoms I wonder if that might be happening to you....You know since thethe side effects of mirena is migraines. I encourage you to Google a hemiplegic migraine and its symptoms and if this sounds like a possibility to see a Dr(neurologist) who is familiar with them...as I was told not all neurologists are (??)

    Again thank you for sharing your story and feel free to read mine and link yours in my comments.
    Jennifer

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    1. Jennifer,
      I have not heard of hemiplegic migraine. How do I find a doctor that is familiar with them. Ive seen three neurologist's and not one has brought these up. What do they do to diagnose it? I will certainly read your blog, and I'll post yours on a link here on mine.

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    2. I never heard of hemiplegic migraine until I was recently hospitalized for seizure/stroke like symptoms. I happen to have a doctor who was familiar with them and who had treated many patients for them. I'm not quite sure how to go about finding a doctor to diagnose you besides calling to the Dr offices and asking it that Dr is treating patients for them or by doing a Google search on neurologist and hemiplegic migraine and your area maybe? I had SO many tests while in the hospital so I'm not sure which test(s) or combination of tests diagnosed me. but I encourage to pursue finding out what is going on. My Dr said because of the hemiplegic migraine diagnosis I have an increased risk of stroke, it's scary but at least I have a "warning" from my Dr. Please feel free to contact me - I would be happy to give you my email address.

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  4. I thank you very much for sharing this , recently my wife has had the muscular pain symptoms and he broke my heart to see her in so much pain and I feel so helpless, had physios and doctors look at her and finally the pin it down to fibromyalger, which my wife immediately told me she felt like they missing something upon researching I have come across numerous articles and blogs like yours , and I'm 100% sure that I have the answer as she has a merina also.

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    1. Naathir,
      I'm so sorry for you and your wife. It effects the whole family. I haven't stayed up to date on here, and looked at responses. Did your wife get the iud removed? How is she feeling now?

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  5. I got the mirena in November 2016, during the summer 2017 I started having lots of body aches. The doctor gave shoots for the pain, and I had blood test. Everything came out normal. I went back a few times got more blood test, again normal. He gave me pain medication so I could sleep. The medication made me sick. I went to a 2 doctor he took Xrays found nothing, and gave me meds to stop the pain that would make me sick. So a few months go by I go to my eye doctor for new glasses (note last visit seeing him was before the mirena). He never gave me glasses that day July 10 2018, but sent me to the ER asap for Optic nerve swelling. This is were the fun ready begins, of course the doctor at the ER nor the follow up visit with test that led to an MIR/MRV because of my tumor like system ask me if I had the IUD, so after the text that Did my MIR ask me, and Thank God my family doctor at my request call me to let me know that I didn't have a brain tumor. I started researching on line, I typed Mirena Optic nerve swelling and bingo I found a link to my health issues,I got the mirena out 4 days ago. The doctor that took the mirena out said it could take 3 months for the optic nerve swelling to go away if its the mirena. I am going to try detox to speed it up.

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  6. I got the mirena in November 2016, during the summer 2017 I started having lots of body aches. The doctor gave shoots for the pain, and I had blood test. Everything came out normal. I went back a few times got more blood test, again normal. He gave me pain medication so I could sleep. The medication made me sick. I went to a 2 doctor he took Xrays found nothing, and gave me meds to stop the pain that would make me sick. So a few months go by I go to my eye doctor for new glasses (note last visit seeing him was before the mirena). He never gave me glasses that day July 10 2018, but sent me to the ER asap for Optic nerve swelling. This is were the fun ready begins, of course the doctor at the ER nor the follow up visit with test that led to an MIR/MRV because of my tumor like system ask me if I had the IUD, so after the text that Did my MIR ask me, and Thank God my family doctor at my request call me to let me know that I didn't have a brain tumor. I started researching on line, I typed Mirena Optic nerve swelling and bingo I found a link to my health issues,I got the mirena out 4 days ago. The doctor that took the mirena out said it could take 3 months for the optic nerve swelling to go away if its the mirena. I am going to try detox to speed it up.

    ReplyDelete
  7. Hi i dont know if you'll still answer im hoping u will i know its years later but i was wondering how you're doing if your symptoms have gotten any better i have gotten the mirena as well didnt have it that long before it started causing many issues very similar to yours i took it out after 2 months i took it out in nov and still have some of the symptoms such as anxiety and leg and arm weakness

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