T1 for 36 years. Always decent A1Cs 6.5 - 7.0 range.
Normal BP, hypothyroidism.
I started noticing small blind spots in my eyes several years ago. They look exactly like the spots you would experience if you looked at a bright light then looked away. Best I can describe them as are greyed out areas, almost like small spots of static.
I have had every eye test imaginable - OCT, slit lamp exam, OPTOS, pressure monitoring, fluorescein angiography, visual field including micro perimetry, ERG, and the only thing that has come up are a few small areas where they may be some hypoperfusion. No bleeds or irregular blood vessel growth have been detected.
Has anyone else here had a similar experience? The blind areas are progressive and new ones appear every few months. They initially start out as black spots with defined borders and then fade to a softer grey.
I am concerned because without a diagnosis of any kind I am not receiving any treatment and the vision loss is continuing unabated.
Any input would be appreciated!
Thanks in advance.
@Matt905, I have RP (retinitis pigmentosa) and your symptoms sound somewhat like it. RP covers a great many different conditions, all related to dying rods and cones in the retina. It has nothing to do with diabetes. RP affects peripheral vision first and works its way towards the center… kind of the converse of macular degeneration, which affects central vision first. Used to be there was nothing to be done. However, they have found that dosing with vitamin A slows progression. Look it up and then ask your ophthalmologist.
@Matt, I really don’t know, but I pasted your post in an email to a cycling friend ophthalmologist who specializes in the retina. If he responds with anything helpful I will pass it on to you.
As I have only very mild and stable retinopathy, so I am not one of his patients.
@Matt905 my friend just emailed me back, here’s his response:
This sounds like areas of macular non perfusion. The things that are likely to cause blinds spots like that are edema and loss of blood flow. Not seeing the angiogram it is hard to tell but seeing “areas of decreased blood flow” Esp in the macula would be very concerning.
Maybe this will help your ophthalmologist to determine the problem. It would be good if you could be examined by a retina specialist like my friend.
I’m sure you have been dealing with this a long time, however when I run low sugars for long periods I get persistent dark spots. Sometimes light spots.
Then it goes away when my sugars return to normal.
I also get floaters. It seems that over time they drop down out of sight, but I always have one or 2 in my vision.
I can imagine this is a very tough thing to be happening.
I hope your doctors can figure it out
I think I may have whatever you’re experiencing. I have 3 of those “blind spots” in my left eye, sort of in a triangle. Started when I was 17, am 31 now. One of them is pretty persistent—kind of always there, but usually not too noticeable. The other two have mostly faded. I see my ophthalmologist every year and they never find anything wrong. Curious to know what it is, and whether or not it’s going to turn into a problem.
That sounds very similar. Mine started as a small spot on my right eye when I was 17. It gradually turned into 3 larger spots clustered around my central vision.
The progression was similar in my left eye but started when I was 22. It’s now 3 - 4 significant spots there as well. Every so often a new one appears. It’s very prevalent at first then sort of fades to a grey color.
In the past 5 years the left eye has gotten much worse. I also suffer from some very strange sensations in my head, similar to lightheadedness and my memory and concentration is horrible. It’s possible it’s all related, who knows.
@Willow4 is your RP genetic. My son has X linked RP which means it is passed from father to daughter to son with the daughter being in most instances a carrier of the disease exhibiting no signs of it. There are exceptions like my sister in law who exhibits a mild form of RP.
@Stemwinder_Gary, I have no idea. Genetics never tested. My RP was dx’d in 1983 when I noticed a problem with night vision. My RP has been very slow progressing and it has truly affected my life only since about 6 years ago when I could no longer drive. Cataract surgery at that time cleared my central vision and I can still read, especially on screen where contrast can be adjusted, ergo my Kindle for books. I can function quite well within my own environment, including feeding and care of my horses through the winter. But I am completely lost when outside my farm and need a guide.
I have always wondered about the genetic component of my RP as well as my DM, Hashimoto’s and vitiligo. My grandmother, who also had DM as well as undefined vision problems, had married her paternal uncle. So concentration of genetics is certainly a possible factor. I have 10 grandchildren. One of my daughter’s sons developed rheumatoid arthritis at age 17. My son’s youngest son has been recently dx’d with celiac. He is in his early 20s. My brother’s son has digestive problems which I suspect are also genetic stemming from our mutual grand (great grand) parents. No one else has come up with anything… yet. Maybe genetics play a part. I often wondered. Is it genetics or commonality of exposure? Intestinal microbiota? True medicine is in its infancy. There may be answers in the future. I am now 80 years old. I will never know.
My understanding is that RP is far worse in males than in females and progresses to blindness much more quickly. How is your son doing? Is his hearing affected too?
X related genetic diseases are often carriers only for girls. That’s because women have XX and if one chromosome is bad, the other will take over. Boys are XY and if the X is bad there is no fall back.
There is the rare instance a girl can get 2 copies of a bad chromosome.
@Willow4, Your RP sounds much like that of my sister in law, she is nearing 70 and is still able to drive during daylight hours but not at night.
My sons RP is genetic. His maternal grandfather had it as well as one of his grandfathers brothers and one of his grandfathers uncles.
As you said RP is much worse in men, my son has been unable to drive since his mid twenties, he is 40 now. He is considered legally blind. He has tunnel vision with the light at the end of the tunnel getting smaller with time. His RP does not affect his hearing.
This is the case with my wife, she is a carrier. since she does not have the disease I assume she has one good and one bad X chromanone. My oldest son inherited her defective X chromanone, his younger brother does not have RP, he got lucky in the genetic lottery, he inherited her normal X chromanone.
@Stemwinder_Gary, knowing what we know today about the genetic transmissibility of RP, I probably would have had genetic testing before having children. Or, one might even consider the soon-to-be ability to genetically alter a fetus to avoid such diseases. But such things were not even a consideration at that time. And my kids were all born well before I was dx’d. I feel for your son. RP is one reason I love the outdoors. My field of vision, while constricted and murky at the edges of the tunnel when I am in a confined space, expands when outdoors because there is so much more distance. I feel liberated when out of doors. I probably don’t make myself clear. But I’ll bet your son will know exactly what I mean. However, one does get used to things after such a long time. And of course, one has to accept the lack of independence in these circumstances.
They will do genetics testing if there is a known genetic issue in one or both parents. It’s more likely to have a genetic mutation or error in the genetic code of the baby, which is why they generally don’t test for it in otherwise healthy people.
If you are past 35 they will strongly suggest genetic testing because it’s more likely you could have genetic abnormalities, not inherited, but things that can go wrong like Down’s syndrome.
There is one exception. If both parents are Jewish, it is pretty standard to have a test for tesachs disease, which is a horrible inherited disease passed down primarily in jewish people.
In the case of marriage though, with 2 young people with no knowledge of genetic issues, it’s cost prohibitive to screen everyone. And even if people know there is a chance. I m not sure they would call off their marriage because of it.
Have you been checked by a neurologist/migraine specialist? Ocular migraines are rare, but leads to temporary and permanent lose of vision, often in radial segments. Treatment is similar to that for migraines.
Mike
