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I don’t even know how to begin to tell this story, but I know I have to write down what has happened in my life over the past few years. It has been a roller coaster ride with new situations and events like never before.
Edie and Noble
In April 2005, while camping with my husband Noble and our dog Sam and cat JoJo at Lincoln Rock State Park, I had a weird vertigo experience which passed quickly but then some slight dizziness reoccurred off and on for about a year. After seeing several doctors I was diagnosed with an inner ear virus which they said would go away and it did.
However, by May 2006, I was having trouble walking — my legs would not work correctly, and it became progressively worse so that I had to quit playing tennis (3x a week) and jazzercise (4-5x a week). Finally, I could only get around with the help of a cane and Noble’s arm.
I saw several doctors both here and in Seattle over the course of time between the summer of 2006 and January 2007, including four different neurologists. No one seemed to be able to diagnose my deteriorating condition. By now the fine motor coordination in my left hand was affected, at times my speech was slurred, and the stiffness in my legs made walking extremely tiring and difficult. I had a multitude of tests — more than you’d care to hear about — MRIs, CT mylograms, bone scans, blood tests, spinal tap,VEP, EMG, EEG, and on and on …. I had gone from a very healthy and physically active person to a very handicapped one. My whole life had changed.
Noble and I finally made up a name for my illness since the doctors couldn’t seem to identify it. It became ESCP (Edie’s Spinal Cord Problem) — not exactly a medical term.
Along the way I’d been told by one neurologist I had primary progressive M.S. and then another neurologist in Seattle finally gave me a diagnosis of Devic’s disease or NMO (neuromyelitis optica). He made his decision from a lesion on my thoracic spine seen in the MRIs. He sent a blood test specific for this disease away to the Mayo Clinic who were the authority on this disease, but he added even if it came back negative he still believed this was my problem. He started me on Imuran, an anti-inflammatory medicine.
The blood test came back negative for Devic’s and the local neurologist didn’t agree with this diagnosis but would not commit to anything else for certain. Noble picked up the phone and called Mayo in Rochester, MN. They were the most knowledgeable about Devic’s disease from all the research he had done.
On March 19, 2007, we flew to Rochester for a week’s evaluation in the neurology department. What an experience that was! Two doctors met with us initially and scheduled me for all the same tests I had already had over the past year and a half (plus some more) while trying to figure out what was wrong with me. At the end of the week of re-testing I was told for certain I did NOT have Devic’s, I DID have a copper deficiency which could cause spinal cord problems, and there was a possibility of Primary Progressive MS which was NOT treatable. I was also told to stop the Imuran since I didn’t have Devic’s and to start on a copper supplement. The doctor then asked me to get one more blood test done
before leaving Rochester, which I did on Friday. On Monday morning I received a call from the Mayo doctor saying they had the results of that last blood test and were surprised at the results indicating I had a rare GAD65 antibody in the blood affecting the spinal cord and brain stem. Like the copper deficiency this, too, WAS treatable with IV steroids and Imuran long-term … wow… what a blessing to have something treatable. They now believe Primary Progressive MS is unlikely. They said get back on the Imuran and begin IV steroid treatments immediately for five days in a row and then once a month for each of the next four months.
I have returned to the Mayo Clinic in Rochester for several visits since 2007. The most recent was this summer. My doctor (Dr. Pittock) said they had hoped only to stabilize me, but that I’ve made such good improvement that I don’t need to return for 18 months to 2 years. We are so grateful for the excellent treatment and coordination between the doctors at the Mayo Clinic who were able to provide a successful treatment plan for me. Thank you Mayo Clinic from the bottom of our hearts.
The God things that have meant so much to me follow:
Noble had retired January 7, 2006 and had major back surgery on January 11, 2006. I was able to help him recover from that BEFORE my illness became a debilitating situation where he had to assist me in just getting around.
The Mayo doctor we were assigned JUST HAPPENED to be the author of a research paper newly published in 2006 on this GAD65 antibody marker test. The doctor in Seattle had given me the Imuran starting in January, so I was only off it for 3 or 4 days before Mayo told me to get back on it. The Devic’s was OUT of the picture, and it was a horrible disease God removed that one. I now had a treatment plan for this rare illness as well as the copper deficiency.
There were several serendipities along the way. Just to mention a couple while at Mayo, one day we were sitting in a waiting room for an appointment and an attractive young woman got up and came over to us from across the room. She said she had noticed how lovingly we were treating each other and wondered if we were believers. She saw Noble’s Promise Keepers logo on the front of his shirt and said she knew it when she got over to us. What a sweet serendipity and encouragement that was to us. I told her she should have seen us earlier that morning arguing over the way to get to the right office in the building!
And the nurse who did the spinal tap was open to my sharing about an estranged son of ours as she had some difficulties with a daughter and wrote down the book I recommended to her that helped me by Navigators Jerry and Mary White called “When Your Kids Aren’t Kids Anymore.” I know she will get it as she very carefully wrote all the information down, and we had a wonderful talk. I don’t think she was a Christian, and she will get good counsel from this book.
And there was the medical technician who seemed surprised when I told her what I had done to occupy my time during all those MRIs of the back and brain — praying and singing “Amazing Grace” and reciting Phil.4:6-7 to myself. She said “Meditation is good.”
There was a woman MD at Mayo who was dictating her notes about me while we were sitting there with her. I remembered another previous Seattle doctor’s notes we had read that cheered me up as they said I was a “pleasant woman looking much younger than her years.” So I said to her, you can add something like that in your notes and she did! We all got a laugh out of that one.
During the past year or so, I have had so many wonderful friends praying for me and with me … some through small Monday night groups at church, some came to my house to pray over me, family members and other friends from all over the country have prayed, e-mailed, sent cards and words of encouragement and support , phone calls, etc… One friend even fasted on my behalf on a regular basis. I didn’t realize the depth of care and concern they had for me. It has been humbling and such an example of love — God’s love. The elders of the church laid hands on me and anointed me with oil for the first time in my life. That was a huge encouragement to me.
I had a wonderful message from God last Monday night as I was talking to Him and reading a daily devotional book – I finally “got it” – and I am THANKFUL for this whole difficult experience as I have grown closer to Him, to Noble and to so many other wonderful friends in addition to gaining new empathy for the disabled/handicapped. I have a new appreciation for the love He has shown me through others. If I could take it away I wouldn’t have changed anything for this experience. I was just living my life and then God had a detour for me to learn some new things and understand Him better. He has things to teach me through these hard times that I may not have learned any other way. I know now how to share His love with others going through similar problems. His love has been demonstrated to me over and over again through this situation. I knew much of this in my head but it finally broke into my heart, and I will be forever grateful for this illness and God’s loving care for me through it. I would not trade anything for this whether I am healed or not. I have been truly blessed. EdieA
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Edie, what a wonderful testimony of God’s presence in your life. What an amazing response to such a life-changing situation. We have been so blessed to know you and Noble. God’s blessings on you both today.
Edie,
Thank you for not being afraid to share your faith. It is nice to see that there are still believing Christians who believe in the power of Jesus Christ and are not afraid to acknoledge it.
Hi Edie and Noble…
Just re-read your wonderful testimony..still have it on my email from when you originally sent it to me. Without a doubt, I know it will be used by God to minister to the right people that need the encouragement and hope your article brings. What a marvelous site that Mayo has provided for patients to share their experiences. Praising God in advance for all the ones this will encourage.
Dear Edie,
What joy to read your story and hear how God used the love of friends, the prayers of many, and the skill of a Mayo doctor to help you in this time of crisis. I especially appreciated hearing all you have learned and how much you have grown in te midst of this trial. You and Noble are a blessing to me and my wife. We love you and we will keep on praying for you.
Thank you both for sharing about this website so I could read about all God has done for you both. It is amazing what you had to go through yet, as you said, God was with you at all times even in the MRI. You lived out your faith in Jesus Christ and that could be seen by all. We miss you both. Betty and Greg
Dear Edie,
I am 40 years old woman and have quite similar experience with my illness since last 5 years, except my problem started with Small Spasm on my foot. It is about 2 months that a Doctor in Pune/India had diagnose my problem as Gad65 antibody.
My question is if you had finished your treatment or you still are using any medication, and if you are now living your life as a normal person without any stiffness on any part of your body.
I would appreciated to get your kind respond on my note.
God bless you and Noble.
Golnaz:
I just now saw your comment and wanted to respond if it could help you.
I have continued taking azathioprine and assume will always be on this medication.
I am to return to Mayo Clinic this summer for a check-up (2 years since I was there).
I still use a cane most of the time when walking but can do without it in the house and on level surfaces. I do live a fairly normal life — still have balance problem — cannot run or walk fast…have had two falls since this illness happened to me and broke a bone each time as I have osteoporosis and am now taking a daily injection for this called Forteo. This medication has nothing to do with the GAD 65 though. At my last checkup the GAD 65 had decreased significantly. Small amount of stiffness still but not the large amount I had prior to taking the medication. Initially I did have a lot of trouble on the upper part of my feet – sounds like you did, too — spasms. No longer am bothered with that part. Hope this information helps you.:
Edie: You are an amazing woman and neighbor.
You and Noble are truly inspirational.
Love, Patti & Del
Thanks for your story – I am researching Forteo – and your story came up and I just “happen” to read it. Praise God for all He does at the Mayo! Blessings to you.
Edie,
Noble and I have been getting caught up by emails and he mentioned your illness. I am glad you are getting better and that God is using it in your life. When I think I’m through with His lessons, He always brings some more, even at age 73.
God bless you both,
Ed
I want to thank “Edie A.” for her openness and honesty in her article about her journey with GAD65. My besy friend has just been diagnosed with MS. I am a nurse and have cared for many MS patients through the years and was a nurse for a MS doctor. I have to say that I cried when I heard the diagnosis. I also want to thank Edie A. for sharing her faith in this article. I am a borned again Christian of 52 years, and I know that the Lord truly is in control and that He has a plan for each of our lives. My thanks Edie. – Alberta
I am 54yr old christan and my lord and savior jesus christ bless me each and everyday. In July 2010 I was diagnose with rrms but, Jesus say I am Healed and I beleive that. I am healed by his grace and love. So blessed Anita
Dear Edie,
I am a 47-year-old mom with two young teen boys. I just wanted to thank you for your story. After 4 diagnoses of “Relapse-Remit MS or NMO” (over 3 years with no relapses and no NMO antibodies) and many other symptoms which have put me in a wheelchair and kept me from driving and going outside, I recently saw a doctor at Johns Hopkins who has said he believes I am experiencing progressive MS and possibly a copper deficiency.
We have a very, very small extended family, so the weight of the work to take care of me and my boys has fallen most heavily on my husband’s shoulders. The boys have been wonderful, too, but since they are children my greatest desire is to try to maintain the most “normal” childhood we can for them.
It has been really frustrating limiting my and my family’s lives as this disease has taken hold, but I have to tell you that the part of your story that I most identify with is the part where God has provided friends upon friends upon friends to support, encourage and pray for you as you travel your journey. I am blessed with the same gift.
God’s also given me the gift of doing everything in His time. I see examples of His control at many places in my life, but the biggest thing he allowed me to have was the time to pull my son out of a wonderful Christian school for two years to homeschool him and provide him with two therapies he needed in order to function successfully in school with a learning disability. He has returned to that school and now achieves exceptional grades an standardized test scores.
Thanks for the uplifting telling of your story. I hope I can continue to praise God for things learned during my illness after it is over, whenever that may be, as you have. Many Blessings, Laura
Dear Laura,
Thank you for your “story” much like mine. I will be praying for you and
your family. I understand your situation and truly “get it”. You also see
something good in a bad situation (with your son). Stay tuned in to God
through this. Jer. 29:11
In His love,
Edie
P.S. After 5 years of the medication azathioprine Mayo wanted me to get
off it due to long term side effects although my Seattle neurologist wasn’t
concerned about that. Anyway, I did go off it two months ago and thus
far seem to be in a remission. Sure hope so. Otherwise will have to start
all over with IV steroids, etc.
Like everyone else, I want to thank you for sharing your testimony and acknowledging your faith. I am a born again believer as well. On January 13th 2012 I was diagnosed with MS and I am 21 years old. I didn’t think it was fair and I cried MANY tears. Reading your testimony encouraged me to keep my eyes on God because I know He will get the glory out of this. Thanks again God bless and I’m praying for you. Do the same for me please
Thanks for your comment.
Yes, I will pray for you in this.
Jer. 29:11
In Him,
Edie
Thank you for sharing your story. My mom is currently under an enormous amount of testing for many different possibilities…similar to your testing. You just gave me a renewed purpose of what I am here to do EVERYDAY but how I can have the opportunity to affect the people in the hospital RIGHT NOW. Thank you for sharing!
Edie – I read your testimony and am very grateful you told me about it. Cliff and I are now even more encouraged to follow a similar path to obtain treatment for our daughter. You and Noble are great friends and we appreciate you sharing your situation with us which strengthened our faith to move forward with our search.
What a wonderful testimony. God is there and present. My father passed on Jan 9 2012 and 5 days later my daughter took very ill. She has now been sick for a year and 4 months and has been to some of the top hospitals and doctors here in Maryland. We are now headed to Mayo Clinic as soon as her Chest CT is done and her biopsy is done. We pray everyday for a diagnosis. Her spirits are always UP, way more UPS then DOWNS which is a blessing. She got sick at 22 years old just when she was about to enter college. We are still standing on FAITH the she too will gain her health back a be a living testimony to people who may not have as much FAITH as she does. So Edie after reading your testimony and shedding tears I had to write a reply even though you might not ever read it. GOD BLESS YOU..and please pry for my daughter Jasmine Evans.
Donna:
Yes, we will pray for Jasmine and you…life is hard but God is good…
as you know.
In His love,
Edie