Hello.
I am not looking for a diagnosis. Just looking for ideas.
I have a complicated history, but I'll try to keep it simple.
I had bacterial infections from a tick that was treated after a year of being ill, but I now suffer from ME/CFS (Chronic Fatigue Syndrome). I have the real kind (not the trashcan diagnosis version) with very poor immune function, poor NK cell function, abnormal cytokines, inability to tolerate exercise, neuro issues, sleep problems, hormone issues, etc. Liver dysfunction is unusual and is rarely part of the clinical picture.
I have a lot of symptoms, but I'll try to list the ones I have consistent with Wilson's disease:
- Chronic liver disease
- Enlarged Spleen
- Infrequent Urination
- Very dark (and foamy) urine
- Neuropsychiatric symptoms that can become very severe
- Enlarged abdomen (not severe)
- Terrible head pain that can last a day
Hepatitis A, B, C (and some other viruses) and haemochromatosis have been ruled out, but I wonder if I could be suffering from copper overload or if my genetics decided to switch on Wilson's Disease for some reason.
I've been taking Alpha Lipoic Acid and Molybdenum (at different times) and these seem to both help me feel better (as long as I don't take too much) and lessen the liver/kidney dysfunction. I consider them critical.
I attached a picture of my eye. I am not sure how to interpret the picture, but when I compare my eye to other members of my family and pictures of a normal brown(ish) eye on the internet, others don't seem to have changes in color around the outside of the iris. If I weren't aware of what a Kayser–Fleischer Ring was, I would say my eye looks normal. However, I am not sure.
I don't thiink my GP quite understands how bad the dysfunction is (despite an echo demonstrating chronic liver disease). I think he assumes that since I can get my liver enzymes down to normal range with ALA and molybdenum, I have nothing to worry about. Nonsense! The symptoms persist!
An interesting note is that I physically and neuropsychologically feel better when symptoms are more severe. Not a pattern one would normally expect.
I have attached a picture of my eye. I just want to know if this could possibly be Wilson's Disease and if I should follow up with someone.