Celeste’s Journey: a decade with MdDS

Celeste, a pastor’s wife, shared her history of remissions and relapses with us, and we’d like to share it with you. From 2003 through 2013, this is her case history.


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Celeste clogging to get on the Jumbotron at an Atlanta Braves game recently.

The following is something I wrote several years ago concerning my years with MdDS. I am sharing it here because many have asked questions. At the present, I am still in a relapse that began with a vengeance in March, 2014, and although I haven’t had a complete remission, my symptoms are usually 0-2. I hope this will be of help to you. Be encouraged!

1. December 2003: I returned to Georgia with symptoms following a 7-day Caribbean cruise. Diagnosed in early 2004; ups and downs for months. Went to Emory in September 2004 and began treatment with Paxil, Klonopin and exercise. Symptoms stopped December 2004.

2. I had back surgery (spinal fusion) in April 2005 with no relapse. I remained symptom-free until September, when I relapsed after a 30-minute ferry ride to Cumberland Island. I noticed symptoms as soon as I stepped on dock. Started on Paxil and Klonopin again and remission came by Christmas of 2005.

3. Next relapse: June 2007. After 15 hours on a church bus returning from camp in Maryland, I noticed the symptoms as I stepped off the bus. I wondered, if we had stopped for the night and broken up the trip could I have avoided this? At this time, I still believed that remission meant “cured.” I started on Paxil and Klonopin again. Remission came once again, the longest ever. Three of our 5 daughters got married in a 10 1/2 month period, with fairly big weddings in April ’07, November ’07, and March ’08… and I did ok!

4. Had to have hip replacement, November 2009. Had been symptom-free for almost 2 years but fatigue and lack of sleep in the weeks following surgery brought on low symptoms. Tried to get sleep meds to ward off MdDS but was unable to prevent relapse. This time Paxil and Klonopin proved ineffective because, I feel, I was unable to exercise like I needed due to the surgery. Mild symptoms continued through the next year and picked up in the Fall of 2010, when my mother died following a stroke. Symptoms seemed to resolve in the new year, as I was able to be more active. I was able to exercise in a pool, then, which was WONDERFUL and I recommend.

5. July 2011: Following some stressful news, along with intense summer heat, I had another bad relapse that went on for several months. I spent 3 months trying to get every medication, vitamin and supplement out of my body, to start clean. Went to my PCP in December and he was willing to prescribe what had helped me most, Neurontin. I had taken it for pain prior to hip surgery and noticed some relief of symptoms. Within weeks, symptoms stopped!

6. 2012: As executor of my mother’s estate, I faced some very stressful and emotional times dealing with matters, and I was getting ready for our son’s wedding in August, too. Relapse came in Fall of 2012, continued mild to moderate (though symptoms were stronger during the holidays) through the first half of 2013 when…

7. Another full-blown relapse following a daughter’s wedding and monsoon rains in June and July 2013. Had to withdraw from county commissioner race. October 2013: tried combinations of herbs, including ginkgo biloba, black cohosh, and valerian root, which I read had been helpful to a sufferer.

Seven relapses in 10 years brought on by boat, bus ride, travel, stress, lack of exercise, fatigue… no rhyme or reason. In that time 5 of our 7 children married, our younger son was deployed to Afghanistan, and 8 of our 9 grandkids were born. Along with a normal life (I’m a pastor’s wife), a lot was going on! But I DID have remissions, and in the remissions I felt cured. So grateful but I tended to overdo it when I was symptom-free, and I want to be more careful in the future if the Lord allows another remission.

CelesteCeleste
50 at onset
multiple triggers

Celeste’s Journey: a decade with MdDS was last modified: August 11th, 2017 by MdDS Foundation

2 comments

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  1. Joann I mpastato

    Oh how great Celeste to go into remissions! I have been suffering with MdDs now for over. Seven years without a single remission. Living in Louisiana with all the storms ect. my symptoms rock between 6&9 every day & I’m slowly becoming a recluse at age 79. I am a widow of almost 3yrs. Live alone in a house too big for me but after living here 51 yrs get overwhelmed just thinking about the logistics of a change when I can’t even make simple decisions without my rocking going bolistic. Since you are the wife of a Pastor please keep me in your prayers. I’ve oftenthought about telling my story but a writer I’m Not! Good luck! Hope you have many & long remissions !

  2. Marla

    Thanks for sharing your story Celeste. I saw the photo of you clogging and was wondering if you are a clog dancer. I used to clog dance until I got MdDS at age 50 in 2001.

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