So my story is quite complex in that I have been quite ill for many many years and could never figure out why or what was going on. Over the past decade and more I have been seen by as many as 10 different medical physicians for a variety of symptoms, and you can’t imagine the amount of money that comes along with all the copays and medication. Everything came to a head last fall when my health took a turn for the worse and I pressed doctors for answers and got copies of my personal medical records. Here we go:
Upon reviewing my records my story dates back to April 1, 2003. I woke up one day and noticed a circular rash on my right arm just below my shoulder and I had several smaller rashes on my torso.
In addition to that, I noticed later that day that I was really tired to the point of exhaustion. A few days later I noticed a tremor in my right hand, difficulty concentrating and had a hard time speaking and formulating sentences. This obviously alarmed me so I called and made an appointment with a doctor who specialized in Internal Medicine. She examined me and made note of all my symptoms and dismissed it as Rosacia and Non-Essential Tremor and stress. A few months later I began having severe migraine headaches that would last weeks at a time. This would continue for a few years. Then in 2007 the tremors became worse along with the migraine headaches. I went to my primary care physician who treated me for migraine headaches and suggested that I speak with a counselor for anxiety as he felt that’s the reason for my tremors. Keep in mind I told him that I was not stressed or anxious, but he assured me that it must be the case, so taking his advice I made an appointment. After a few sessions, the counselor did not see a need for me to continue. I could have told her that!!
My symptoms continued for a few more years and I continued to get the same answer that it was just stress or in my head. I was given all kinds of medicine to treat and prevent migraine headaches that only worked for a short period of time. As you can imagine it became quite exhausting and frustrating. I was taking care to 2 small children and they needed me. I was in and out of the Emergency Room and doctor’s offices over the next few years trying to get some relief. I would pray to God for answers…they would eventually come, but it would take a few more years.
Fast forward to 2011. I was on my way home from work and all of a sudden I just felt as if I was going to pass out. My hands were both trembling out of control and I could not focus or think and had a very hard time speaking. I became quite frightened and called my husband on the phone who told me to meet him at the hospital. Upon arrival I was seen by a neurologist, given an MRI, CT Scan and EKG. You see at this time, my heart rate was up, I was lethargic and not my self at all. I was admitted and told to make an appointment with a neurologist who would further evaluate me. The day of the appointment I was told that I had a Chemical Imbalance as well as Anemia and again an Unexplained/Non-Essential Tremor and was given several scripts of medicine and sent home. The medicine would “work” for a while and I thought finally I was going to get well. Not so! My symptoms would return as well as some new ones. In 2012 I began to forget things and experience anxiety and I would easily become irritated over the smallest things. My tremors were at an all time high, it became hard for me to hold items with any weight to it. I thought just maybe the doctor might be right-that I was under stress from my job and didn’t realize it; and now that I no longer held that position maybe my symptoms would go away. Not so. The exhaustion increased, but I continued to push myself.
It’s now 2013 and by this time I am just beside myself. I think it was July or August that I started having issues with my legs. It felt like my legs were on fire! I thought I had slept wrong or something and dismissed it. Over the next month or so the pain got worse, to the point that it kept me up at night. My legs would go numb at will without warning. The pain would go from the bottom of my feet up to the thigh. This went on for a few more weeks until I went to visit my neurologist yet again. He performed all kinds of test and suggested that I had Restless Leg Syndrome or MS. Here comes more medicine. A few months later I started having pain in my abdomen near my liver. Blood tests had shown that I had an increased Ammonia Levels and I needed to see a GI doctor. Here we go again…So the GI doctor ran some additional test and made the decision for me to have a Liver Biopsy due the fact that the high Ammonia Levels usually indicates issues with Liver function and with my family history of Liver Disease (mom passed away in 1994) he thought I should have this done, so I did. The results were inconclusive. The doctor was stumped and said he didn’t know what else to do for me and my liver appeared to be functioning normally. Are you kidding me? Here I go back to the Neurologist and he has no answers for me either other than to continue to monitor my ammonia levels for the next few months. I would be in and out of the hospital lab having my blood drawn; I had every blood test known to the medical world. My ammonia levels would continue to go up and down without a “real” reason. Here’s where my story gets interesting.
I met a young lady who heard of what I had been going through (as she had been dealing with similar situation herself) and suggested that I might have Lyme Disease. You see for many years, she too had been in and out of the hospital and several doctors offices trying to find answers and had eventually been diagnosed with Chronic Lyme Disease. She sent me all kinds of literature and I started researching the illness on my own. Most of what I read resonated with me and what I was going through. I took a chance and called my neurologist and asked to be tested. He said he didn’t think it was needed but did the test anyway. The results were negative…or so I thought! It was during this time that I saw a documentary on Lyme Disease called “Under Our Skin” . It documents the stories of several different people who are dealing with Lyme Disease and the “controversy” surrounding it. I will explain later. Long story short there is a more detailed test that must be performed if a person has had Lyme Disease for more than 1 year and most doctors don’t want to deal with it (again I will explain later) or they don’t have the knowledge needed. I called my Neurologist up and asked to be tested for “Chronic Lyme Disease” and was totally shocked by his response. Here’s what he said (via his nurse): “Chronic Lyme Disease is a very controversial subject and I don’t want to test you for it. If I do and you come back positive, I will have to treat you (since I am his patient) and I don’t want to deal with that. I think you should see an Infectious Disease doctor who can maybe help you”. I was beyond upset. Don’t these doctors take an oath to do what they can to help all patients???? I guess that went out the window…
Help would eventually come…
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