In hindsight, I wish I would have been writing summaries from doctor appointments and findings for you to get the full scope of what we’ve been through the last three years. However, you would have read a lot of frustration and negativity that I’m glad won’t see the light of day! The following bullets are shorter and hopefully a better read:
July 2012 through August 2015:
- Initial symptoms: heat intolerance, low stamina, and tingly arms and legs.
- Mercy Hospital neurology appointment; blood work for Lyme disease, thyroid function, etc.; all normal.
- MRI to check for MS; negative.
- Exercise stress test; normal.
- Family doctor referred to me Mayo Hospital; denied as not being sick enough to be seen.
- Additional symptoms: short-term memory loss, difficulty standing in one place very long without feeling faint, extreme fatigue, and making mistakes at work as an HR staff assistant for a company of 150 people.
- Family doctor referred to me neurology at University of Iowa Hospitals and Clinics (UIHC).
- First neurology psychological test; mild, cognitive issues; because of my age and and the test indicating anxiety issues, they were not concerned with the results; suggested I see a talk therapist.
- Testing for sleep apnea; positive. They concluded my lack of sleep, coupled with anxiety, were the cause of all my symptoms.
- Terminated from employment (February 2014); began the ongoing process of applying for jobs for unemployment; did not interview well since I forgot questions while answering them. I began applying for simpler jobs for less pay, but doubted I would have the stamina to perform them either.
- Put our house on the market; sold within three weeks, pending on sale of the buyer’s house.
- VEP eye test done for spacial issues; the left eye was abnormal, and my vision was fine.
- Opthalmology appointment requested by neurology; they dismissed the VEP test results; said that particular test is worthless; no other findings and my vision is fine.
- With supervision I gradually took myself off Pristiq and Wellbutrin for depression to pursue all possibilities for cause of symptoms; no change; went back on Pristiq.
- Sought a second opinion with another family practitioner; referred me to a second neurologist; blood work, other tests, and second MRI with contrast; all test results were within the normal range; she suggested talk therapy.
- The second neurologist referred me to Mayo Hospital; denied again as not being sick enough to be seen.
- Bought and moved into a condo in a neighboring town.
- Three appointments with my therapist from 18 years ago; she concluded my depression is under control and I have no signs of anxiety; she recommended I see a provider in internal medicine.
- Second neuropsychological test; slight decline from previous year; because of my age they still concluded it’s anxiety and recommended I continue with talk therapy.
- Initial appointment with internal medicine; she scheduled consults with geriatrics, neurology psychiatry, sleep apnea, and driving. Results: geriatrics declined to see me because of my age and because they would forward me to providers I had already seen; the neurology psychiatrist said my symptoms were due to the lack of dealing with trauma in my past, my diet, my consumption of diet soda and inattentiveness rather than memory loss; the sleep apnea provider changed settings on my machine; the driving consult revealed confusion and difficulty to focus after 10 minutes into the test; suggested I not driver over 25 mph.
- At the follow-up appointment with internal medicine, she concluded I have not dealt with difficulties from my past which is causing anxiety; suggested cognitive behavior therapy and said she would refer me to a memory clinic if interested.
- I am not going to cognitive behavioral therapy or to a memory clinic, which would require yet another neuropsychology test. Additionally, I am not going back to the neurology departments who have not listened to me or providers who have known me for a number of years, i.e., my former therapist, my psychiatrist for prescribing depression medication since 2008, and my family practitioner who all can measurably speak into my physical and mental health history in comparison with the present.
- Went to my family doctor who has received test results and summaries from all the above appointments. After discussion, reflecting on my history as her patient, and what she was inclined to diagnose earlier, she diagnosed me with early onset dementia with possible autonomic dysfunction. She prescribed Adderall for focus, which incidentally also helps with my fatigue. I’m to schedule a follow-up in three to four months to talk next steps after she has had a chance to talk with a neurologist friend of hers about my history.
Some logistical steps since my last appointment:
- I’ve applied for disability and my application has been forwarded to their medical team for review.
- Steve has made an appointment to talk with our insurance guy and attorney about the eventual, long-term care. We have always been the type of folks to realistically and proactively face the future, and get things in order BEFORE the time comes to implement a plan. (Like selling our house and downsizing BEFORE the potential of financial hardship.)