Thursday, December 27, 2012

So we wait....

Just wanted to do a quick update since my last neurology appointment...

I went back in after my "relapse" ended (that one lasted about ten days--numb arms and hands, inability to use my hands correctly, brain fogginess, tingling in my face, arms and legs...), and he decided that he was going to write out an "open" order for another MRI, but this one WITH contrast, for me to do if/when I ever have another relapse.  Of course, I always hope that I won't have another one, but I'm not stupid...I understand that it is very just don't know.  If/When that occurs, whenever that is (even if it is six months from now), I am to call his office, let them know that this order is in my file, and tell them to immediately send it over to the X-ray office.  Then, I am to do the contrast MRI and take those results over to my neurologist to then compare to the one that I had done last month.

The first MRI shows six "lesions", but since the MRI was without contrast, we don't know if they are inactive or evolving.  When another one is done, he will see if there are more than six and/or if those six have changed/grown/evolved.  If there is an increase in the number of lesions or growth of the size of the current lesions, I will need to go down the road of further testing for MS (since that will be another sign that leads more in that direction).  If there is no change (God willing!), MS will be ruled out, and I will continue to be in the category of "unknown autoimmune disease" (most likely Silicone Immune Toxicity Syndrome). we wait.  I obviously hope that there will be no more relapses and, therefore, no more need for further testing, but I'm prepared for it should it come to be so.  At least I know that there is this "baseline" MRI in my file now to compare to.  More information is always a good thing.

So far, since that relapse, I have been doing very well!  I'm still taking daily supplements, I did my fourth liver detox right before Thanksgiving, and I am also still taking my extra 2000 mg of vitamin D daily (since I showed deficiency in that area).  Did you know that vitamin is considered a hormone and not a vitamin?  I didn't.  Now that I do, I'm not at all surprised that the level was bottomed out considering the damage that it did to the rest of my hormones there for awhile.   Wouldn't that be great if adding this vitamin D could be the bump I needed to finally stop with these relapses?  Fingers crossed!

Much love to you all!  I hope you had a wonderful and blessed Christmas.  I know that--two years ago--I didn't know if I was going to be with my family on Christmas morning.  This year, I was...and I felt good....and I was happy....and I didn't think about what the Mirena did to me a single time.

Keep those chins up, ladies... It will keep getting better.  YOU will keep getting better.


  1. Hi nice Post written by you guys. It is amazing and wonderful to visit your site. Thank a ton for such a nice post.

  2. Hello, have you ever been checked for Lyme disease? If you Google Lyme disease symptoms... You would see that your symptoms are all there. Lyme is often misdiagnosed with MS, RA, lupus and several other things... Its with checking out, I have/had all of the same symptoms as you and have been treating it for about rugby years now... Get the national Lyme test done... You may have had Lyme and it was dormant but the trauma to your body from the mirena made it show its ugly head..I hope you try that!

  3. Thanks for posting these. I wish you nothing but the best.

  4. How are things now? I'm at 9 months post mirena and still having odd symptoms.

  5. Hi! What do you mean by bobbles and not using your hands properly? I just removed much iud because of similar symptoms but my hands are shaky and trembly. Is that what you mean?

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  7. My hands have been shaky as well, and I feel I have lost strength in my right hand, the same side I have horrible arm pain. It started out feeling like I had a shot in my deltoid muscle, but after a couple of weeks it became bone pain as well that would radiate into my clavicle bone. I pulled my IUD out 12/29/16 after discovering that I am not alone with these types of symptoms, and learning of the possibility of silicone poisoning. Since then my right arm pain is gone, still some bone pain in my clavicle area and Left shoulder, but it is not nearly as bad.

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