Do any of our distinguished Dopers know anything about this subject? Someone dear to all of us is suffering severe retinopathy and heart problems. Diabetes was ruled out as a cause and his doctors are now looking for an auto-immune disorder that may be the problem.
First, autoimmune retinopathy is rare. There is a term, ocular immune privilege, that references the fact that usually eye tissues are usually exempt from inflammation due to immune system attack.
Reading a brief summary it seems doctors would look first to exclude various cancer related causes.
Some such cases present with detectable antibodies to certain key proteins (recoverin, α-enolase and transducin-α) in the vision system. But sometimes no such antibodies are detected. That can lead to frustration when it seems that a cause is elusive.
In those cases, sometimes the root cause is genetic. There are a variety of quite rare syndromes that can result in vision loss.
ANYmore information would helpful. How old is this person? Do they have any established diseases (especially any previously diagnosed ‘autoimmune diseases’)?
Common things being common, and with diabetes, by far the most common link out of the picture, I would wonder about high blood pressure (with high the BP causing heart problems secondarily).
Although high BP arises spontaneously in most cases, it can also develop as part of an autoimmune disease. This is especially the case if the kidneys have been affected by the autoimmune process (a common development in AI diseases).
Sometimes, there can be autoimmune inflammation of the blood vessels going to the eyes and occasionally there can be similar blood vessel inflammation involving the heart.
I should probably keep my mouth shut, but assuming the information you have is correct, an autoimmune connection is not the first (or second) thing that would come to my mind in someone with retinopathy and heart disease. That is not to say that it can’t be autoimmune but what you describe sounds very unlike most autoimmune conditions. Indeed, perhaps surprisingly, the heart is not very often affected by autoimmunity. Likewise the retina. To have both affected by an autoimmune disease without any of the other more usual manifestations of autoimmune disease (i.e. arthritis, skin rashes, kidney problems) would seem to be highly unlikely. OTOH, degenerative disease, certain metabolic conditions, and even one of the increasingly appreciated diseases of the mitochondria would all seem inherently more likely to me.
I’ll see if I can get more information. My own brief research didn’t indicate any relation to heart disease, in this case it may be coincidental.
The person is me.
I am 46.
I know tha retinopathy is usually diabetic but because of my low a one c they ruled it out. The retinal speciaist says it does not matter much for short term treatment. But he does want to know if it is some other auto immune because that will affect things long term. I have a heart time taking notes so i am not sure how to pronounce or spell the syndrome he suspects. Sorry.
I spoke with the cardiologist again. He doesn’t think the heart problems are necessarily related to my decaying vision. The seeming simultaneity is just an illusion or coincidence. Both problems were developing for a while
i apologize for the all caps in this post. I am trying to master the speech to text program and i do not know how i turned all caps on. Right now i am focusing on figuring out spreadsheets as i still hope to go back to work.
Ah, I’m so sorry to hear that. I wish I had something intelligent to say or at least something to help you. The best I can do is note that while autoimmune retinal disease (as opposed to autoimmune diseases of the uvea, i.e. uveitis) is something seldom encountered in Internal Medicine, that is obviously not the case for a retinal specialist. In other words, it sure seems like you’re seeing the right person. I suppose a consultation with a rheumatologist (especially one who has an interest in vasculitis) could also be worthwhile.
Bumping the thread.