Friday, July 17, 2009

What is Hashimoto's Encephalopathy?

Hashimoto's Encephalopathy is a neuroendocrine auto-immune disease. The bodies immune system produces antibodies that attack the neurons in the brain. There have only been about a dozen cases in the U.S. diagnosed since 1966, though quite possible many cases have gone undiagnosed. Some of the most common symptoms of Hashimoto's Encephalopathy include: disorientation, psychosis, coma, stoke episodes, tremors, concentration and memory problems, jerks in the muscles and lack of coordination, headaches, partial paralysis on the right side, and speech problems. Sometimes, patients are mistakenly diagnosed as having had a stroke, or having Alzeimer's.



Of the few patients with this disease, the presentation and origin of the disease varies. In Kimberly's case, HE is a rare progression of her Hashimoto's Thyroiditis that was diagnosed in March of 2008. Looking back, we now recognize that there were signs of neurological distress at that time, but coincidentally was treated by steroid treatment to reduce inflammation in the thyroid. Hashimoto's Thyroiditis was named after the Japanese physician Dr. Hakaru Hashimoto, who first described this condition in 1912. Hashimoto's Thyroiditis is the most common cause of hypothyroidism in the U.S., and is an autoimmune or chronic lymphocytic type of thyroiditis. Hashimoto's Thyroiditis is not uncommon. The thyroid gland typically becomes enlarge and the antibodies the body normally produces to protect the body and fight foreign substances such as bacteria, are found to 'attack' their own thyroid tissue. Kimberly's thyroid is filled with hundreds of non-threatening cysts.

June 30, Kimberly drove to a Neurologist's office to meet and discuss some symptoms that were troubling her. While sitting in the office, she began to shake uncontrollably from head to toe. They call these myoclonic jerks. This is similar to what patients of advanced Parkinson's experience. After a short visit with the doctor, Kimberly was admitted to the hospital where they confirmed the diagnosis of Hashimoto's Encephalopathy and began high doses of IV steroid.
After several days, Kimberly's symptoms were controlled and she was sent home on oral steroids. Unfortunately, the steroids have forced her to be insulin dependant and have reopened stomach ulcers. Another coarse of treatment will be required to put the disease into full remission and to keep her from relapsing. However, there is not another drug identified that will accomplish this goal.

Kimberly and her husband John will be flying to Rochester, MN to meet with doctor's at the Mayo Clinic on July 27. They are praying that the doctors and specialist will give the answers that they seek.

7 comments:

  1. we are praying for you both!

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  2. OMG--I had no idea this was going on. I am so sorry & send you all prayers. If there's anything I can do to help out with the kids, please do not hesitate to ask.

    Cindy (mills) Nohavitza

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  3. Home from summercamp-love you and miss you-your the best mom and dad in the whole wide world -Logan I hope your having fun.I miss you. I can not wait till we go to sea world tomorow.I love you.Write to you soon-Bradie

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  4. Hey little sis. You don't know how happy I was to hear that you had clean undies to go see the doctor today!! Bradie and I got a big kick out of the picture of you in the wheelchair. We agree that you should have twin his and her wheelchairs though. Poor John gets the shaft! She did say that we would then have to pay someone to push you guys through the airport though. Quite clever that girl of yours. Hmmmm Moms quick wit!! We laughed til our sides hurt. The kids are good they are playing Star Wars battles upstairs and taking no prisoners from what it sounds like. We will all curl up and watch a movie later then off to bed so we can terrorize Sea World tomorrow. No worries Aunt C has it all under control here. You worry about impressing them with your brain. Make them prove how smart they are OK. I miss you and love. Can't wait to talk to you so we can have a great laugh. All my prayers are with you and remember God is in total control!!! Thank you JESUS!! We would so screw that up. See you soon my precious.
    Your big sis - Lizz

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  5. Be it was ever so brief, it was good to see the 2 of you in January. You are always in my thoughts and prayers. I am deeply saddened to hear of your condition Kimberly and pray for your comfort, peace and understanding and for God's speed in the treatment you seek and if it is His will, that a cure for you and the others afflicted by this disease to be healed.
    You are not alone and you are loved by many.
    Take care and God bless you all.

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  6. Hey Kim. I am just becoming aware of your situation and wanted to tell you that you have a lot of prayers coming your way. I didn't even know you struggled with Hashimoto's Thyroiditis. Thank you for sharing your story and please let me know if there is anything I can do for an old gymanstics buddy! :) May God continue to shine his light on you in this time of need!

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