My Platform NMO Rare Disease

Friday, April 5, 2013

God keeps His promises

For no matter how many promises God has made, they are “Yes” in Christ. And so through Him the “Amen” is spoken by us to the glory of God.
(2 Cor. 1:20) NIV.
In a world of uncertainty, our trust is in a faithful God who will always keep His promises.
I continue to trust the promise of God that I am healed.  Recovery from a transplant is not as easy as I thought it would be.  I am thankful that I have been able to put one foot in front of the other day by day I am going to recover.  I am very tired and have been feeling cold this past week. The transplant team assures me that my body is still making adjustments, and it is still early.  I seem to feel better later in the day than when I first get up.  I try hard to stay busy during the day, but am still having to take a nap at some time during the day.  I am happy to answer phone calls, emails, and other means of communication.
I thought it would be a good idea to go back and detail all that has happened leading up to the transplant. According to my medical records I was seen at Boozmanhauf eye clinic for an unexplained optic neuritis in late 2002.  After many examinations locally and Little Rock, it was determined that I needed IV steroids for the inflammation in my eye.  I couldn’t see in my right eye when I went to the doctor to begin with, and that did not change even after the hospital stay.  A week later I was examined by a Neurologist who diagnosed me with MS, scheduled me for a series of test, but said that the treatment for MS is to treat the symptoms as they come up.  At that particular time the only problem I was having was the optic neuritis.  MRI, lumbar puncture, nerve conduction studies all pointed towards MS.  There is not a specific test to confirm MS all other diseases are ruled out and then MS becomes the diagnosis, based on the symptoms.  By this time I had begun having some weird symptoms for example my feet were numb, I was unable to grip anything with my hands, and I felt like there was a band around my waist all the time, it was very uncomfortable.  Another Neurologist saw me and said he was aware of a specific test for NMO, that he thought I should have because of the symptoms, and because more symptoms were coming up even with the medication he’d prescribed for me.  The test was positive for Neuromylitis Optica, (NMO) aka Devics Disease, the doctor told me that this was a very rare disease and that he could not tell me a prognosis, that we would wait to see what course the disease would take.
I did some research and found very little information on NMO.  I remember thinking to myself there is no way I am the only one with this disease, I need to find somebody else who has NMO to talk to.  I prayed and asked the Lord to lead and guide me to help myself, I really felt like the doctor did what he thought he could do and the disease would run its course.  Every time a different symptom came up I found myself really searching for help and answers.  The Mayo Clinic had little information, about treatments, however they did offer suggestions once the disease progress to a certain point.  I prayed and asked God again to direct me because I did not want to get to the point that the Mayo Clinic described to me.  For, a couple of years things seemed to stay the quiet, and God gave me strength to manage the symptoms I had been having.  (I will pick up here next time).


  1. Thank you for being so transparent and sharing your story! Praying God uses this transplant to heal you completely! Love you friend:)