First, I would like to say if you are taking the time to read this or you are considering donating, thank you from the bottom of our hearts. I would like to tell you as much as possible about me, my family and my situation.
My name is Jeremy Terry and I am 39 years of age. I graduated from East Lawrence High School in 1996 which is here in Trinity. I have never considered myself to be any more special than anyone else but I realize at the same time I am so blessed with what God has given me. I am married to the most wonderful woman , one that only God could have led me too. I have an amazing 9 year old son who is wise beyond his years and incredibly kind. Its the love of family, friends and most importantly a loving God that has kept me upright and battling on.
My illness began in hindsight , approximately a year ago with fatigue and a little weakness but nothing major at the time. At the end of last year, I began getting headaches, and painful muscle spasms mainly in my back. Those spasms increased to the majority of my body at the beginning of this year. There were new symptoms that made their self known such as twitching, blurred vision, speech problems, memory, and digestion issues. The problems I started facing soon became an issue to the point to where I had to quit my job that I had worked for 17 years. I really loved my job, it gave me a great schedule, great insurance and I really enjoyed my line of work in telecommunications. I made my first Dr. appointment in January and was diagnosed with a severely low vitamin D level. This however was only the beginning of my journey to discover what these symptoms were a part of. I soon experienced muscle pains in my chest which was diagnosed as costochondritis and that would turn out to be a misdiagnosis. I experienced stomach pains which led to the discovery of gastritis (stomach ulcers).
I developed swallowing difficulties which was later discovered to be esophagitis. I started having muscle atrophy(loss) in my hamstring and forearms. Due to the spasms , twitching, swallowing and speech issues ; I was sent to have a brain and spinal MRI. My doctor at the time told me that there were two conditions that most likely would cause this. One was Multiple Sclerosis and the other ALS. The letters ALS are something you hope you never have to hear mentioned to you as a possible diagnosis. That is the abbreviation for Lou Gehrigs disease. We continued to pray that ALS was not the condition we were facing even though my mind felt that this was a likely scenario.
We received the results of the two MRI scans and both were clear. I was then told that ALS was highly likely and sent to a neurologist. I would like to say though that it was at this time that we made our pastor aware of my situation and we prayed for an odd result that would throw the doctors for a loop. We prayed that there would be a host of conditions that may be responsible for this besides the one fatal ALS. We were referred to a Cullman neurologist and the confirmation for a nerve/emg test was immediate which was amazing. As the emg test was administered my twitching had stopped, and my muscles were relaxed. The doctors told me and my wife that they would review the results shortly and we waited for what seemed like hours. The tests came back negative for ALS (praise God) and I was diagnosed with benign fasisculation syndrome. I had done my fair research on this and I knew that I did not have this condition either. You know your body better than anyone and its hard to relay that at times to the doctors. They still could not explain my muscle atrophy. I was then sent to an orthopedic who cleared me of any spine or trapped nerve issues. My neurologist then ordered a lower lumbar puncture which turned up negative as well.
My quest for my diagnosis continued as my neurologist told me that there were no conditions that cause all these symptoms but I knew there had to be. They were all tied together. Over the course of the next month I would make 13 emergency room trips which all resulted in "your fine, your blood work is good". My heart xrays were fine, and my ekgs were normal. My next step was to get properly checked for Lyme disease as it can and does cause these symptoms. I went to a lyme specialist who runs a big fancy test from Igenex that detects about any trace or coinfection of Lyme possible. I was clinically diagnosed with lyme by the lyme doctor but could not confirm it until my tests came back. At this time, it was hard for me to walk as my hamstrings had shrunk and my back and hips were in pain due to muscle weakness. My tests came back two weeks later and of course, I did not have lyme disease either.
My wife and I prayed daily to God as to our next step. It was obvious that there were no local doctors that would be able to diagnose me properly and that whatever I had was rare. We decided that we had to get into the Mayo clinic as they would surely find out what is going on. After a lengthy online submission, we received a call back that day and we were scheduled without a referral to the Mayo Clinic in Minnesota. We were excited to say the least and through the help from our church, we were able to fly there and get a room across the street. We were able to see the neurologist on our first day there and he performed some basic muscle strength test. You have to push, pull, and show different degrees of strength. He looked at me and said "There is nothing wrong with you". Despite my muscle loss, tissue loss, subcutaneous fat loss, I was told theres nothing wrong. They said they would do a second emg the next day anyway. The emg was performed the following day and it was normal (which I knew it would be) and was diagnosed with chronic fatigue syndrome and sent home. I knew again, this was not right. When it's your body, you know somethings not right.
After we came home, we were devastated. We told everyone what our diagnosis was and when it comes from the mayo clinic it carries weight. I was afraid that I would have a hard time finding a doctor to see me after receiving this from the Mayo Clinic. I continued to experience bad digestion issues and pains in my stomach and went to another ER visit. They performed a scan but whats amazing is , a muscle scan was performed and finally,.....confirmation of what I was desperately trying to tell anyone that would listen. Theres something wrong with my muscles . I arranged a visit to a doctor that I use to see and he took one look at me and said "you have a myopathy" Myopathies can cause all those symptoms depending on the type. Some will be normal on emg tests and normal in bloodwork. I then had a muscle biopsy done which confirmed Myopathy. Myopathy is a muscle disease that can be aggressive, the only problem is they have no idea what caused mine and still cannot find the cause. Everything to this point had been a misdiagnosis. At this time, I am in severe muscle pain and I try to battle with exercise and supplements. I have seen three rheumatologists and no one can give me any medication that will help a noninflammatory myopathy. I have been my own doctor researching muscle supplements and different ways to help the body heal. I have had no doctor take over my case and do the research for me so we are left to do our own research.
I tell you all this so you would understand my story. I have a beautiful God given family. We just moved in our dream home a year ago. We are blessed to be able to stay in our home for now but we are seeking an expensive treatment that would allow my own cells or tissue to be taken out and readministered into my muscles and would help regrow muscle fibers. I am selling my own truck to help fund this but it will be a much larger expense than even we can bare . For the first time, I am reaching out to my community and those that my read my story and are asking for assistance. I love my family so much and my son is only 9. I want to be there for him when he has those special moments in his life that he needs a fathers opinion. I want to be there with my wife so I can continue to enjoy the life of the amazing woman that God put before me. I will update this as much as possible as to my progress. Please pray for us. Thank you again for reading this and for any contributions that you give. God Bless
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