Thursday, October 25, 2012


Okay....we just got home from my appointment about 45 minutes ago.  By the time the doctor showed up, I thought I was going to throw up.  Good thing he walked in before I did.  :-)

....  Let me try to explain this all in writing.  Here is what I know:

1.  I wish I had an ultimate answer to give you.  I wanted to walk out of there able to say that either 1) I have MS or 2) I don't have MS.  Obviously, I was much rather hoping to stay No.... :-)  I don't really have that answer, BUT this is what I do have....

2.  According to the MRI, the neurologist found six lesions/"hot spots" on my brain.  Could it be associated with MS?  Possibly....BUT, he said that they can also be caused by things like migraines, traumas, etc., and that they can be from an autoimmune response.  So....yes, lesions CAN mean MS, but they don't necessarily mean MS....if that makes sense.

3.  He said that, "I didn't look at your MRI and think immediately that 'Wow...she definitely has MS...which, if it was bad, would happen."  He reminded me that MS is not a disease that can simply be diagnosed with a quick look at a simple is a diagnostic disease that takes time to diagnose through various testings, progression of symptoms, etc.....  So, I say that--since he didn't immediately know for sure that it was MS--it is a good thing.  It just means more waiting...and I've been doing that for three years now, so that--I know--is something that I can do.

4.  He did some physical testing in the office--reflexes, responses, etc....and he said that I wasn't showing signs of any nerve damage....another good thing.

5.  He did notice the sharp difference between my right and left eye and that my right eye has had a sharp decline in vision, which is "interesting"; however, he said that, with classic MS, that eye's vision would not be correctable with things like glasses or contacts.  For me, glasses help.  It doesn't give me 20/20...but glasses do help that eye tremendously, so I take that as a really good "anti-MS" sign.

6.  He wants to see me on November 8th (two weeks) to see where my symptoms are at, if they have subsided or worsened, etc.  At that point, if they have not gotten any better, I need to have further testing.  First is another MRI--but this time "with contrast/dye"...that type of MRI will show if the lesions are active/evolving or inactive...which gives more answers.  Also, if it is something like MS, over time, there will be more lesions, they will change, follow a pattern, etc.  At THAT point, we will be closer to an answer.  Unfortunately, with this MRI being my first one, and being without contrast, this has to be more of a "baseline" to start from than an absolute answer.  If there are still questions, I may need to do a spinal tap if he thinks there is reason to.  Apparently, 90% of people with MS will have it show up in the results of a spinal tap.  He doesn't think I need to do one right now, though....

7.  He gave me a prescription for a sleeping pill because he wants to see if, after having definite solid sleep nightly for two weeks, does it seem to make a difference.  Uh.....okay......  I'll do it for these next two weeks until I see him, but that's it.  I don't want to take a prescription strength sleep aid long term, but I'll do it for two weeks just to be able to answer his question.

8.  Since, after whatever happened to me since I had the Mirena inserted happened, I go through periods of remission from my symptoms and "crashes"(which is an improvement from two years ago when I was sick all the time!).  I asked the neurologist, "But what if, in two weeks when I see you, my symptoms have improved again, but then they come back in three months?  That happened to me just again this last time....I was great for three months, and then--all of a sudden--my body didn't work.  What if that happens again?"  His response was, "Then you come see me, and we will do another MRI and further testing to see if anything has changed." much as I am frustrated because I wanted to walk out of there with a YES or NO answer, I at least feel like I took a step forward.  Number one, he didn't immediately say that I was a definite positive for MS.  That is great.  Number two, this MRI, etc. was a baseline that I know have to compare in the future.  If I still have issues as the future progresses, they are going to do another MRI (with contrast) to see if I have even more lesions, if these have changed, etc., and use that information to give me a more complete answer.  This first round of testing was a baseline....which is one more step forward than I was a week ago....and I have to remember that is a good thing.  One more step toward an answer that I have been looking for.

So now I wait and just live my life.  I'm not going to live it in a "what if" state....that state sucks.  I'm just going to live and not think about it on the days that I don't have symptoms.  Then, if I continue to have symptoms, or if they return at a later date, at least I know that I get to go back in, use this information that I have now, and get even one step closer to an answer.  Until then, I fit into the category of "Unknown Autoimmune Disease"....

I wish I had an answer for you all.  I wish I had one myself.  But, instead of focusing on that, I choose to focus on the fact that I don't have a BAD answer today.  Today, I don't have MS, the neurologist doesn't diagnose me as such....and we will continue to find answers if my body decides that I need more at a later date.  When I get those answers, I will share them with you--I promise.

Until then....I have to go.  My family is down in the family room watching "The Great Pumpkin, Charlie Brown", and I'm not going to miss it.  Time to get back to life and focus on the answers that I do have....that God has blessed me with a great family and a life to continue enjoying.  So, I'm not going to wallow in disappointment of lack of answers.  I'll get them when I get them.  Until that day, I'm going to enjoy the life that I have with those I love.

I can't begin to express how much all of your thoughts and prayers have meant to me.  I feel them.  I really do.  I appreciate you more than you ever know.

Not a definite bad diagnosis, and one step forward, folks....THAT is what we focus on.

Now....I have a life to keep on living, and that's what I'm going to do.  I have some squirrel-ey kiddos, my sweet husband, a Charlie Brown movie, and a pizza shaped like a Halloween pumpkin to get to.  Life, everyone....chose to live it, and deal with the "bumps" when they show up.

Keep smiling.  It's a choice.  And I have much to be thankful for.  I may not have definite answers today, but I don't have bad ones....and any other ones will come eventually....  It's okay.  I'm getting really good at this waiting thing.  :-)

Love you all--Kristi


  1. I got my mirena put in about 11 months ago and about 6 months ago started having a lot of health issues. All of my doctors and my neurologist and my OB all feel like my birth control have nothing to do with it. I feel that they are WRONG so I had it removed today and started feeling like a pregnant woman with my crazy emotions. So I looked up side effects and found the Mirena Crash. My boyfriend googled the crash and found your blog. In reading it I've been amazed at how many of my symptoms you talk about. The blog is great, happy to have found it. Now I don't feel so crazy!

  2. I am new on your blog and i found it because of my many problems with Mirena, i was diagnosed with PseudoTumor Cerebri, a year after starting to use Mirena, i had many of the symptoms you have, have they tested you for this?? I am new to this blogging and commenting thing so if you dont mind maybe emailing me, we can talk, i had seizures, numbness ( i went in to the hospital thinking i had a stroke)my entire body weny numb and i couldnt even smile, loss of vision, hemorrhage on my eye, migraines that wouldnt go away, i am saying all this because as this condition is very rare and often misdiagnosed as typically overweight women going through menopause get it and even then its still 1 - 100000 people, i am only 28 and a healthy not over weight woman. i hope that maybe my diagnosis can possibly help some people struggling with the same symptoms and doctors not knowing what is going on, it took me 2 major seizures , and a hospital stay for finally someone to see it

  3. I have recently found that my Mirena was displaced. It fell out. I only had it 6 months and during that time my anxiety was off the charts and I was a moody mess, but with it out..! It's literally been a week and I've been to the ER twice. Heart palps, anxiety attacks, vertigo that keeps me off my feet and foggy headed, joint pain and this swelling in my glands and nodes in my neck. Even one breast had swollen and had since gone down, but all the way. I came across this blog while searching for people who have this happen after removal, because honestly I'm scared. I have never felt this way. My doctors won't entertain the thought that in this case perhaps the displacement triggered an autoimmune response(also have an "unknown autoimmune" disease). I have a 2 year old and an 8 month old and can hardly function without help. I am a 26 year old previously healthy woman. I don't know if someone willread this and respond. I don't know who to turn to or how to help myself. I'm afraid of what else this could be or if it truly is the mirena. If anyone can help me, I'd be so grateful.

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