Well, I think I have finally figured out my illness and disability.
My history: I was 29 years old, when my father had is multiple bypass surgery. I was a critical care Registered Nurse, and I decided I did not want to be on the operating table at 58, like my father, so I spoke with my doctor, and he immediately started me on Lipitor 10 mg, which kept my cholesterol down sufficiently for 4 years. In August 2002, I began to have wicked headaches, bad enough for me to miss several days of work, I think 11 in all. My wife took me to the Emergency room 3 times because of confusion and headaches. All 3 times, I was sent home with the diagnosis Migraine Variant.
My headaches and confusion worsened over the next 2 weeks, and I missed work all 10 days. My confusion was worsening, only now I was extremely fatigued all of the time, I would stayin bed up to 17 hours a day. My wife called my doctor at home one Saturday, and she demanded he order an MRI scan, (which was not done in the Hospital , as the ER doctor thought it wasnt neccessary), so he got a CT scan which was completely normal. So an MRI scan was ordered, and the following day I had an MRI of my brain, which showed Multiple scattered lesions in the White matter, I think I counted close to 90 several months later when I saw the films, I was referred to a neurologist, and he diagnosed me with Atypical Multiple Sclerosis. About a week later I was headed to UW Madison Wisconsin hospital for a second opinion, to which the MS specialist, said he did not think I had MS, but rather somethink else, he did not know what, but was pretty adimant it wasnt MS. After several hours of testing etc, I was sent home with a follow up in 1 week.
During the course of this week, my headaches fatigue, confusion continued, anly now my right ear was ringing 24/7, and I was seeing white flashes of light in my eyes.
The following week, my symptoms grew worse, and my wife called the doctor in Madison, and his nurse tod her I whould come down there ASAP. So we got in the van, dropped our son off at my parents, and headed to Madison, where I was admitted, and grew terribly worse. I did not know who I was where I was nor did I know my wife and family. I was in the hospital for 28 days, underwent 300,000 dollars of medical care, had a brain biopsy, shich showed Spongiform Encephalopathy, more commonly referred to as CJD (creutzfeld Jakob disease), and invariably fatal disease, I had a muscle biopsy which was consistant with MELAS(mitochondraial encephalomyopathy with lactic acidodis with stroke like episodes. Another invariable fatal disease, for which the only treatment is a Mitochondrial cocktail, which consists of about 15 pills every morning and 15 every evening. These pills are all vitamins and the like, but it ts of one very improtant and key nutrient for those sho take statins, as I found out later, CoQ10. I was about 6 days from being transferred to a Nursing home, (at 34 years old!) But I began to improve, to the point I could be discharged home, with Physical, occupational and speech therapies.
Now I am 38 years old, happy to be alive, a lot closer to God, but on disability. Now for nearly 4 years..
I cant tell you how much research I have put into this whole experience, probably thousands of hours.
My discharge diagnosis was Viral Encephalitis. HAH!
1: starvation of Co Q10 in the brain, may cause Neuronal apoptosism cell death, which I found looks very similar to CJD under a microscope
2: Starvation of coQ10 to the muscles, may cause lots of different changes to the Mitochondria, which was demonstrated on my muscle biopsy.
I am too tired to continue, but I welcome anyone elses input!