Well,.. finally after dozens of tests (which we just completed today... I think) Elizabeth has finally been given a diagnosis! When we first started this whole mess we were told that they were testing for muscular dystrophy or myasthenia gravis, then were told that no,.. she didn't have either of those and that her neuro-muscular issues were probably the result of a virus. They put her on steroids to strengthen her and help rid the virus from her body and within 3 days she was unable to even walk! That is when I called the doctor,.. and when they finally called me back, they told me to get her off the steroids ASAP and to bring her into the office for another EMG......which involved electrodes and tiny little needles. Apparently the person who performed the previous EMG neglected to perform a certain part of it because he didn't feel that it pertained to Elizabeth's case. Well,... apparently that is the portion of the test that seemed to have all the answers. Elizabeth has been diagnosed with myasthenia gravis and has been put on medication to help relieve some of her symptoms.

For anyone who has never heard of Myasthenia Gravis, is a disease that is caused by a defect in the transmission of nerve impulses to muscles. Normally when impulses travel down the nerve, the nerve endings release some kind of neurotransmitter substance . In myasthenia gravis, antibodies produced by the body's own immune system block, alter, or destroy the receptors for this substance. So it is kind of like the body attacking itself. I guess in some cases people with this disease have a deformity in their thymus gland (which is under the breast bone) and it can be removed and alleviate 90% of her symptoms. So that is what they are checking on now.. to see if her thymus gland is deformed. We'll see what happens from here,.... I am hoping that the medication does provide some relief since she will probably be taking it for the rest of her life as this disease has no cure. But at least now we have been told for sure what we are dealing with. She will still probably never get her full strength back and probably will never have to worry about P.E. classes again (I am sure that she is crying on the inside,.. hahahaha... she hates P.E.) But even though this is considered a disability, I refuse to treat her that way. She can do everything that she did before,.. she'll just have to make some adjustments and things may take longer - like chores. But anyway.... I am sooooo glad to finally know what we are dealing with!

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Feb. 1, 2008 at 10:17 PM I am so glad you finally have an answer. It is all very scary I am sure. It is so good to know that there are medications and other options to help relieve her pain. She is so lucky to have a strong and loving mom like you to be at her side. I will keep Elizabeth in my prayers!

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Feb. 1, 2008 at 10:29 PM

Oh, wow.  Heavy diagnosis, Christy.  I'm glad to hear you at least know what's going on.  I'll be praying for her.  (And you!)


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Feb. 2, 2008 at 10:43 AM Arianna had her  thymus removed 3 yrs ago now and about a year after she was off all meds( well she's still on asthma meds) and she has been a cheerleader and played softball last year so there is HOPE!!! Any time you want to talk let me know, ok. Not too often u find someone to talk to with a kid with this disease.

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Feb. 2, 2008 at 5:39 PM

I'm so glad you have an answer but I'm sorry it's not a good one. I've learned with my boys' hearing and speech problems that you don't worry about the disability as much as concentrate on the Ability. She still has many abilities and that is what she should focus on. I'll be praying for you and her and all the adjustments that are to come.


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Feb. 25, 2008 at 10:49 AM I missed your past 2 journals so I didn't know all this was going on.  I am sorry.  How is she doing now?

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