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?

Hi, I am sorry you are experiencing these disturbances. Cerebral small vessel ischemia appears to explain the presence cognitive issues, have you personally read into this more on your own or with your doctor? I am unsure if like many chronic illnesses, your symptoms can vary month to month, year to year (explaining your current good neuropsych testing). Cerebral small vessel ischemia also lists psychological symptoms, so this may be a factor. Many doctors often cannot relate to the experience of their patients' health conditions (having never experienced themselves). It is reasonable to be concerned, and even upset with these changes. I understand the genetic issues bring a physical & psychological concern. Because many of the other problems you listed are smaller on the spectrum, but add up to a lot in your daily experience, could lead him to be more dismissive. Doctors love to say "I don't know" and lean towards somatic causation, especially because the more serious problem seems to have tested better.

 

I think it is understandable to be upset. However I do not know how you present in person, and this raises the question of your general health. There are many conservative ways to improve these smaller health conditions, and a number of them are not a danger within themselves. A good therapist may help with coping with all these concerns, but eating healthy & enjoyable exercise can also help your body regulate some of these smaller issues. Yin yoga is great & recharging, and something to make you sweat (cardio?) is important to naturally detox.

 

I am roughly half your age (30) and have experienced rare neurological symptoms from a spine condition involving inflammation. I am much better now, but there are some currently small problems that are known to be degenerative, and I'm at risk of the original problem returning. So I understand how the brain & gene issues you face can be weighing on you. I have had (and continue) to research my condition & symptoms extensively, because it appears to be a specific rare one, that is poorly understood by many in the medical community. I recently touched base with a foundation for this illness and already there is way more support than expected. Some areas of medicine are poorly practiced, but I don't want to assume this is the case for you. If you can not find a group for Cerebral small vessel ischemia, then there may be one for stroke or similar conditions. They usually have insights for good doctors, lifestyle adjustments, etc.

 

It is a good sign your neuropsychological testing results came back better. Many immune & inflammation issues can be a sign of general health dip, which often can improve with conservative healthy living. A Rheumatologist could help you explore auto-immune if you feel its there, I just wouldn't assume that this is the case. But by all means look into it if you want. A better person may be able to make more connections between all that you have listed. But outside your two main concerns, everything else seems fairly common, especailly with age. I'm glad this new doctor is making the effort. I believe any doctor will take anyone more seriously if you are doing the main conservative things that help everyone inmprove their physical & mental help (exercise, eat right, socialize, find purpose when can't work, research health issues objectively). I hope you feel better.