Questions for anyone with FND, in particular those with vision loss
Hello everyone. To get into my question, I should probably first give you a bit of a background on myself.
I am a 36 year old male and I have a few autoimmune issues. In my early teens I developed vitiligo which, mostly on my shins and hands and it stopped spreading a few years later. Then at age 19, while studying in college I was diagnosed with type 1 diabetes. I have managed this fairly well, some weeks better than others, but have done a pretty good job with it over the years.
Now I must say I did have a fairly traumatic childhood objectively speaking, those I look back on childhood as mostly positive. I had (and still have) a very close relationship with my mother and step father but an extremely traumatic relationship with my biological father and I have not spoken to him since I turned 22 (so 14ish years) and dont suspect I ever will. My mom married my step father when I was 3 and I have called him “dad” ever since and as far as I am concerned he is my dad and I am very close to him. Despite the trauma I have never seen a therapist.
When I was 24 I noticed a blind spot in my vision. I can literally remember asking my mom what her biggest fear in life was when I was a very young child and telling her that my biggest fear was going blind. So when I noticed this blind spot (and being type 1) I immediately began to obsess over it. There was a sense of dread that my life long fear of going blind was written in the stars for me. Immediately I scheduled an appointment with a specialist who looked at my eyes and said “your eyes look great. There are no signs of retinopathy and everything looks fine as far as we can tell”
The spot never left. It has been there ever since in the exact same location and appears as a dark spot in my vision that I cannot see through. Fast forward a few years later and I had developed two new spots. A second spot in my left eye and a new spot in my right eye. iI scheduled another appointment with the specialist but the results were the same. Not accepting this for an answer I scheduled an appointment with a specialist at Duke University. They ran numerous tests and after all of them, also said there was nothing they could find wrong with my eyes, no signs of retinopathy and no indications of visual damage. But I knew exactly where each spot was and cannot see anything where they are. They never go away and never change.
Now at 36 I have many soots in each eye. I gain a new spot in my vision every 6-12 months and they have been permanent from the time I notice them. Having failed with a few specialist I have sort of accepted this. But I am a HIGHLY anxious person. I have high levels of anxiety and I obsess over these spots constantly. My partner will catch me looking at objects or colors with one eye open to examine if my eyes are getting worse on a daily basis. I probably do it over 50 times a day, every day, for the last 12 years.
Today I had an appointment with my endocrinologist. On my last appointment they did an eye exam. I have been expecting the “well you have retinopathy“ conversation since my last appointment as each eye now has numerous blind spots. But the results said I have the very beginning stage of retinopathy in my left eye and none in my right eye. And said that the retinopathy in my left eye would not cause any visual impairment at this stage and by catching it so early, likely never will with good management and treatment.
This was once again frustrating. How can this be? I have significant blind spots in both eyes!
I did more research and that’s when I found FND (which I discovered by the old name Conversion Disorder).
Having just discovered It today, I have many questions but so much of what I have read is relatable. The numerous doctors visits that can’t identify my symptoms partnered by high levels of anxiety and a traumatic background in particular.
I have now listened to a few hours worth of podcasts and have read an additional few hours worth of material on FND. It seems very plausible to me that I may be dealing with this.
But I am curious about a few things and would love to hear from others here. I have been reading through some of the posts on this sub and have heard things like “the issue fluctuates or is worse at some times and better at others” which has not been my experience. My spots have never changed since they appeared. The remain the same shape and size and have been a permanent fixture in my vision since I have noticed them. Does this ring true to anyone else’s experience?
I realize it isn’t wise to self diagnose but I have sought help so many times and found no answers. It has kind of put me on a “take matters into your own hands” mindset after being told so many times that they can’t find anything wrong. I am planning on contacting some psychologist professionals later in the week and exploring this possibility, however. I am also going to email a few people who have personal experience dealing with FND specifically. But I just wanted to see If anyone has experienced anything similar or, for those who are more aware of FND could tell me of what I am experiencing sounds like a plausible FND symptom. I know you can’t give me a diagnosis on Reddit lol. But does the permanent spots in vision sound like something that would potentially align with the diagnosis?
Sorry for the long best and thank you so much for the answers you may have in advance. I am just trying to learn more about this and see what thoughts people in this sub may have as I go forward. I appreciate whatever information you may be able to give me.