Medical Mystery

When I first became sick I thought the most important thing was getting a diagnosis, as if that would solve all my problems. I have been diagnosed With a few things over the years reflex neuovascular dystrophy, leaky gut syndrome, chronic fatigue syndrome and few others. These diagonosis’ are only symptoms of my actual illness. Over the years we have had so many questions and we have found only a few real answers. A genetic test showed us that I have severe metabolic and mitochondria dysfunction, but we still don’t know how to take control of the problems.

As my illness is continuing to get worse ย  more answers are crucial in order to try and slow the progression of my illness. I don’t know if I will ever have a name or an official diagnosis, but I hope we will find more answers to all our questions.

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5 thoughts on “Medical Mystery

  1. I am but I get so tired. Chronic fatigue is part of the illness. Going to doctor at Emory tomorrow morning. I wish you well and hope you feel better quickly. I wanted you to know that you are not alone in this. ๐Ÿ™‚

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  2. This real-life scenario happened to me five years ago. I lost all mobility and coordination rather quickly towards the end of 2009. At the start of 2010, I went to Emory University in Atlanta. They diagnosed Curvical (Neck) Spondylosis with spinal compressions (Myleopathy). I had the surgery in March of 2010, thinking that would fix the problem. In September of 2010, I was diagnosed with Stage 1 Breast Cancer, having surgery in October. After several months, I worsened. In early May of 2011, I was diagnosed with Lambert-Eaton Mysathenic Syndrome (LEMS), which I was told at the time developed with the Breast Cancer. I was hospitalized for almost two weeks with blood exchange transfers. They didn’t have much affect. I then started infusions that July and have been doing ever since. Keep seeking answers. Mine came over a year. Hopefully, you will find yours very soon. I will keep you in my prayers. ๐Ÿ™‚

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  3. I hope you get some answers soon and can ease your pain, I must admit when I was diagnosed with Charcot Marie tooth disease I was glad it had a name as I thought I was going crazy, the same with Parkinson’s . Although they can only treat some of the symptoms, not all. At least I know what I’ve got . Sending you my best wishes x

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