Thursday, October 25, 2012

Longest. Day. Ever.....

Sooooooo......I definitely agree that it is time for an update.  I'm sorry that I disappeared there for a bit.

Let me try to do a somewhat quick overview of where I'm at.....

I've concluded that I am really great at jinxing myself.  A few weeks ago, I was talking to my husband about how much better I was feeling.  I had even stopped taking my Progon B (natural progesterone) for about three months, and I wasn't feeling like I was a slave to my cycle anymore.  Other than the vision loss in my right eye that never returned, I was really feeling, overall, pretty good.

Then, BAM.....

A couple of Sundays ago, while packing to prepare for a family vacation in San Diego, I woke up just not feeling quite "right"....but not bad enough to really over analyze anything.  I was excited to get going on our vacation, and I had a lot to do....

Within a few hours, I noticed that I was having a difficult time remembering what I was packing, or why I went upstairs, or what I walked into that room for (you know the drill).....

Then, I started feeling disoriented...almost dizzy....

Then my hands and feet started to tingle....and soon my hands got weak.

Before I knew it, I couldn't fold a pair of socks well because it was like I couldn't get my hands to do what I needed them to do quickly enough...if that makes any sense.....

By the end of the day, I was pretty emotional because--like I said--I was doing really well, and now I am suddenly thrown back into this scary, "Oh no, what is wrong with me" mental panic that the Mirena has gifted me with far too many times during the past three years of my life.....  I just finally had to admit defeat, and I went upstairs and cried myself to sleep.

The next day, we still left on our vacation, and--thankfully--I felt better.  Not "normal"...but much better than Sunday.  It was like I felt like I had a "hangover" of some sort from whatever happened on Sunday.  I wasn't suffering, but I wasn't strong.  More annoying than anything.  Over the past two weeks since, I still have these "bobbles" that are just off....or weak....or....whatever....just not quite right.

I told my husband that I wanted to go see my doctor about it, and he agreed that I should.

When I went to see my GP after returning home from my vacation (he has finally admitted to me that he agrees that it was something with the Mirena that made me so sick), I told him what happened on Sunday, and he agreed that--even though many of the women who have dealt with all of this regarding the Mirena ended as MS-negative--what I just described did sound like a "textbook MS flare" and that I should finally officially test for it.  I agreed that it was time....I need to know for sure.   Why?  Because although I hardly ever think about it on my strong days, when I have a day like that Sunday, it all comes flooding back...the fear....the panic....the "what ifs"......

I'm just done with it.  I need to hear a neurologist look at me and say, "I'm looking at a picture of your brain, and it looks okay.  You don't have Multiple Sclerosis....or a tumor....etc. etc. etc."  And if, God forbid, I get bad news, I need to finally accept that and move forward with treatment.  If it is MS, then I obviously have to start a protocol for that to slow the progression of the disease, and if I don't, I know that I need to just keep doing what I'm doing for this "unknown autoimmune disease" that so many of you have been diagnosed with that seems to mimic MS to the letter (minus the brain lesions).    Either way, I'll know.

I did get my blood work back, and everything looks okay except my vitamin D level is too low.  I thought that was interesting, and I am now finding that many women who were sickened from their Mirena are also severely vitamin D deficient.  What is crazy is that I have been supplementing Cod Liver Oil supplements (2 a day for months) to aid in my vitamin D, and I am STILL overly deficient.  I'd hate to know how low it would have been if I wasn't taking them!

My husband looked up a bunch of information on the internet, and I was interested to see that extreme vitamin D deficiency can cause many of the symptoms that seem to have re-entered my life over these past couple of weeks--numbness and weakness in the limbs, cognitive difficulties, joint and muscle pain, extreme fatigue, etc.....

I also see that many people with MS are vitamin D deficient; however, people who are vitamin D deficient do not necessarily have MS.  So........I am PRAYING that my result is going to come back as negative because I need more time.  I now know about this deficiency that I can address (the doc has me taking an additional 2000 units of vitamin D3 per day until I get can my levels up) before my body gets "broken down" enough to officially go into Multiple Sclerosis.  That is my prayer...."I need more time.  Please don't let me find out this information and have it be too late."

Which leads me to today.  My brain MRI is done, and I meet with my neurologist in two hours and 15 minutes to find out if I do or do not have Multiple Sclerosis.  I'm not going to lie....I'm nervous.  This day is taking forever.  Please-O-Please-O-Please-O-Please.......

I got this text from my husband (who is at work):

"You are heavy on my heart and mind, babe.  No matter what today brings, we are still going to live an amazing life TOGETHER.  I love you more than life itself."

I'm a lucky woman.  You hear that, Mirena?  You didn't take everything from me.....

Either way, at 4:00 today, I am going to know (and, thankfully, my husband is going to be there at the appointment with me), and--of course--I will continue to share my journey with you all.  I just wanted to give you an update and remind you again that I am here continuing to fight right along with you.

I promise to post my results tomorrow.  Please pray for me as I continue to pray for all of us.

All my love and support to each and every one of you--Kristi


  1. I don't think it's any coincidence that I'm reading this post right now at 4:15, while you're probably walking in to meet with your doctor. I'm praying for you right now girl; praying for time, praying for good results, but mostly praying for peace of mind for you and your family. You're so brave to share this with everyone, you have no idea how many people this is helping!

  2. Another one here struggling with low vitamin D ever since I had the misfortune of encountering Mirena!

    At first, I thought this was at the root of all the problems. Now it's just another thing to deal with, as I find more and more issues left behind by this awful device.

    I'm leaving this comment a little late, so I'm glad to see you've already gotten the news that it's not definitely MS. Both my "adopted" sister and my half-brother have MS, so I'm praying neither you nor I are ever so diagnosed...

    Take care,

  3. Why would someone approved this kind of device if only causes pain? I also read an article about a woman suffering from this device for over 3 years, in those years of excruciating pain? I can't imagine if I can bear it. She claimed that the device migrated in her abdomen and the doctor's diagnosis was "the pain is caused by a scar tissue" without making any verification and giving the woman a prescription and told the pain to bear with pain. I can't believe this device, it's suppose to cure the problem not to cause it!

  4. I have had most of your same symptoms, but no detected silicone levels, but I too was extremely deficient in vitamin D. I am not sure if I still am. I wonder if there is a link because I didn't have that problem until after the mirena either.

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