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    Posted June 13, 2014 by
    JanaC58
    Location
    Russellville, Arkansas
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a chronic illness

    The disease no one has heard of.

     
    As caregiver for my wife, I will try to tell her story. This all started in 2011, My wife and I were camped at our favorite State Park and she noticed she had a sore right hand and a sore right foot. We didn't think much of it. She is a professional seamstress so maybe carpal tunnel for the hand and maybe a stone bruise on her foot.
    The condition rapidly worsened to the point she decided to go to our PCP. Xrays showed nothing. She was sent for a nerve conductivity test. Still nothing. PCP decided to send her to a neurologist who ran multiple blood tests. Two markers can back high. One was for reumatoid issues and the other for Celiac Disease. Neuro said don't worry about the reumatology issues the marker was too low. The Celiac however was off the scale. Sent to a gastroentrologist who confirmed the celiac with a biopsy. Started the gluten free diet and got that under control but it didn't fix the neurological problems. After two months she went from a healthy 52 year old woman to wheel chair bound and unable to care for herself. Severe neuropathy in both feet and right hand. Six months went by with no diagnosis. Finally sent to a neurologist that had a good idea of what was going on (paraneoplastic syndrome) but they couldn't find the cause. She saw a multitude of doctors, oncologists, rheumatologists, pulmonologists etc. A barrage of tests, biopsies, x-rays, CT scans, PETSCANS, spinal taps, you name it, it was done. They suspected cancer but couldn't find it. It was all based on a hysterectomy performed 3 years earlier due to what we were told was fibroids, but they claimed was cancer. After a petscan indicated lung cancer another biopsy was performed. It came back negative. The search was still on. We scheduled a trip to the Mayo Clinic. Three days before we left we found out through another biopsy that she had lymphoma. We went ahead and made the trip to the Mayo just for a second opinion. They confirmed what was suspected, paraneoplastic induced cerebellar ataxia. Damage to the cerebellum part of the brain that controls motor functions.
    This caused by an inappropriate response by her immune system to the cancer. She has also been diagnosed with sjoegrins disease, vasculitis, tonic pupil and peripheral neuropathy.
    She has lost the use of her right hand, cannot stand without assistance and her speech is slurred. She also suffers with "jumpy" vision.
    The cancer is under control with chemotherapy, although the hematologist at the Mayo Clinic said her lymphoma is very slow growing type of cancer called marginal zone lymphoma. In fact he said if not for her neurological issues he would probably take a "wait and see on the chemo". But, in order to stop the damage being done by her immune system, the cancer has to be stopped. The damage to her cerebellum be reversed. We have tried the only treatment recommended with minimum improvements. He condition remains the same with little hope of recovery. We are currently looking for a medical trial for stem cell therapy that may be our only hope to get back some of her former life.

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