FINALLY… A DIAGNOSIS! After 10 long years of doctors and tests, I finally was diagnosed with MdDS last week. As awful as it is, I am relieved to finally have a name for it. I am especially grateful to find the MdDS Foundation website.
Ten years ago, I took 3 10-hour flights within a 5-month period. Since then, I have had extreme fatigue, along with the rocking sensation. All of the healthcare professionals I have seen have focused on the fatigue problem, but for the most part just dismissed the rocking part of the puzzle. A few years ago, I finally just accepted the diagnosis of Chronic Fatigue Syndrome and have done my best to live with the MdDS symptoms.
However, last November, I came down with a cold, and the rocking dramatically increased. I saw my primary care doctor and she put me on Flonase, Sinutab, and motion sickness med. The rocking sensation continued to escalate to the point that I could not sleep without medication and could not take a nap even though I was/am EXTREMELY fatigued.
I then saw an ENT and had all the usual vestibular testing, along with an MRI of the inner ear and brain stem. As I’m sure is the case for many of you, all test results were normal. I was referred to a neurologist, and he diagnosed it as MdDS, although he knew very little about the disorder. He started me on Amitriptyline but I am uneasy about using a tranquilizer due to the risk of addiction. I am searching for a doctor in or near Portland, OR that is very familiar with MdDS. There are two on the foundation’s website, but I would really appreciate hearing from anyone who has had a positive experience with a doctor in my area. Thank you in advance to anyone who can advise me on this.
51 at onset