radscat’s Profile

Close Mitochondrial Diseases

Things are a-changin'. I have been undergoing 3 years of testing, MRI's, CT's, pulmonology, rheumatology, cardiology, neurology, and my internist. I have by-lateral white matter diffusion in the brain, a "ice cream freeze" type of head pain that comes and goes, have had intermitten loss of hearing that came and went, a high sedimentation rate, hyper-thyroidism, arthritis and tested locally and at Stanford University. They have tested for CADASIL and that was negative. Now, they want to do muscle biopsy for Mitrochondrial disease. I have just started research on Mitro diseases.....but, some of the symptoms may have been over-looked for many many years. One daughter has been diagnosed with fibromyalgia, thyroid disease, chronic fatigue and the oldest daughter developed Type I diabetes at age 25 after her third pregnancy. Now, our internist is beginning to suspect a link between us all. Over the years I have had bouts of fatigue and severe muscle, not joint, aches. At one point in the mid-80's, I was told that I had RA even though the tests didn't prove it. I thought that to be a bit bizarre and didn't accept it. Then they thought maybe poly-myalgia. Don't know! I accepted it as just inflammatory osteo-arthritis. I just quit complaining about the aches and pains until the ear and then the head pain started. I had the skin biopsy last Fall for the CADASIL The neurology office freaked at my MRI as I have been told, "Never have seen an MRI that looked like that without the person either being very ill or dead". Even at Stanford, the doctor was not sure what to do or where to go. I tire out, gained weight, but I run on momentum. Alway had a high metobolic rate and high energy...til now.