I have had chronic medical problems for over 20 years. My immune system does not seem to be working properly, as I get recurrent shingles, cold sores, diverticulitis, bronchitis, UTI's, etc. I also have a lot of neurological findings, including peripheral neuropathy and cerebral small vessel ischemia. For the past 4 years or so, I have experienced problems with memory, concentration, word recall, dizziness and balance and history of falls. I also have tremors that come and go. I have been repeatedly evaluated for MS and Lupus, but do not test positive for the antibodies for autoimmune disease. I do have periodic limb movement and possible narcolepsy, although if I do have narcolepsy, it is not a classic presentation. I do have genetic mutations which increase my risk for both MS and Narcolepsy.
Recently, I have had testing showing I have an enlarged spleen, thickening of my esophegus, small lung nodule and oteoarthritis in my back. There is evidence of chronic systemic inflammation typically seen with autoimmune disease, but the general tests do not reveal anything positive. I have had continued difficulty working and after having a respiratory infection last November, have been very limited im my ability to work much at all. Due to the increase in symptoms and increased difficulty, along with lots of physical findings without an easy explanation, I have been very focused this year on trying to figure out what is going on. I am in my 50's and have a very extensive family history of similar chronic disease and early mortality (both my parents died in their 60's).
I had some neuropsych testing done in 2016 when I started experincing cognative difficulties and the testing revealed mild cognative impairment in a few areas. We just repeated the tests to see if there has been decline. I actually performed quite well. Overall, my tests were in the high normal range and did not match what would be expected for my symptoms or the findings on my brain MRI (although he did not even compare the findings of this testing with the 2016 test, which I thought was the reason we were doing them). Therefore, he gave me a list of psychiatric diagnoses, including somatic disorder, compulsive personality traits and anxiety and adjustment disorder. He did concede that immune dysregulation can cause inflamation which could be causing my fluxuating eperience with cognative difficulties. And if there are medical findings, my symptoms would be "organic", but in absense of medical findings, it must be psychiatric.
These psychatric diagnoses suggest I have an "excessive preoccupation" with my health in "absense of a serious diagnosis". I am wondering what is a "normal" amount of concern or anxiety in response to seeing damage in multiple organs in your body, damage and atrophy in your brain, increase in symptoms and infections and no explanation as to why? And when you are unable to work and earn a living, should a "normal" response be to not be anxious about it? My doctors just say "I don't know why" and have not been concerned with doing specialized testing to figure it out (until I switched to a new physician this year who has been ording lots of testing). Am I crazy to research it on my own? Does that make me compulsive? What it is a typical response to having physical disease with no answers or diagnosis?
Has anyone else experienced the same? Any words of wisdom?