Story about Narcolepsy , Anemia, Antiphospholipid / Hughes Syndrome, Anxiety, Chronic Fatigue Syndrome / M.E., Door Syndrome, Dystonia Disorder, Fibromyalgia, Gastroesophageal Reflux Disease, Hermansky-Pudlak syndrome, Malignant hyperthermia, Maple syrup urine disease, Mendelian susceptibility to mycobacterial diseases due to partial STAT1 deficiency, Migraine, Narcolepsy, Noma, Osteoporosis, Peripheral Neuropathy, Pleurisy, Progressive multifocal leukoencephalopathy, Raynaud's disease, Restless Leg Syndrome, Spinocerebellar ataxia, Von Willebrand Disease.

Narcolepsy is only one of many conditions

Apr 16, 2019

By: Teri

Year Condition Began: 1963

Narcolepsy

Anemia Antiphospholipid / Hughes Syndrome Anxiety Chronic Fatigue Syndrome / M.E. Door Syndrome Dystonia Disorder Fibromyalgia Gastroesophageal Reflux Disease Hermansky-Pudlak syndrome Malignant hyperthermia Maple syrup urine disease Mendelian susceptibility to mycobacterial diseases due to partial STAT1 deficiency Migraine Narcolepsy Noma Osteoporosis Peripheral Neuropathy Pleurisy Progressive multifocal leukoencephalopathy Raynaud's disease Restless Leg Syndrome Spinocerebellar ataxia Von Willebrand Disease

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As a child of approximately 6 years old, I began having migraines. I didn’t know what they were, even though many in my family had them, including my parents and grandparents. By the time I was in my 20s, I would drive myself to the ER, where they would administer meds, leave me in a dark room to sleep off the meds, then drive myself home some 6-8 hours later. That would be unheard of today.

I was then diagnosed with Lupus. It turned out to be Silent. It just lays dormant in my body. My Mom’s was rampant, but I really never knew it was there.

Next, I was diagnosed with Antiphospholipid Syndrome. This is a blood disorder. The only take away for me was that I had had an early-term miscarriage years earlier but never knew why ~ I was told it was because of this blood disorder. This was in the early 90s. I think they’ve made progress in that field now.

Then came the Arthritis and Fibro diagnoses. Those took a while to obtain. Fibro is a diagnostic diagnosis. No blood test. In the 2000s, it was considered a trash can Disease and many said it was all in our heads. In fact, many were sent to psych wards before diagnosis. Tragic.

I really don’t remember when my Narcolepsy symptoms started because I think they were so tied into pain medication for my other conditions. As a chronic pain patient, I developed a high tolerance for pain meds. So if I was tired or sleepy from time to time, I assumed it was because of the meds. I finally realized that falling asleep in the middle of conversations, while standing up, in the shower, while eating, driving, and sleeping through 10 alarm clocks just wasn’t normal. I went for tearing and was shocked to learn that I had Narcolepsy. I had never even heard of it.

When there is one autoimmune connective tissue disease, there are usually at three. I have at least 30 various diagnoses. I can’t even remember them all.