Retinitis Pigmentosa: Seeking Clarity on Vision Issues

I would like to ask the doctor?

Dear Doctor,
I have been diagnosed with pigmentary retinopathy and have had poor night vision since childhood, with visual acuity around 0.3 to 0.4 in both eyes (with glasses).
Three years ago, during an eye exam for new glasses, two doctors evaluated me; one mentioned macular edema, while the other noted mild cataracts.
However, due to my busy schedule and financial constraints, I did not pursue treatment.
Recently, I have been experiencing blurriness in my left eye when reading (it feels like the letters are overlapping and slightly displaced, making them unrecognizable.
I don't notice much distortion, possibly because everything appears mixed together.
When using the Amsler grid, there seems to be slight distortion, but it is not constant; it feels like there is water on top, sometimes normal and sometimes blurry and distorted.
My color discrimination is still good, and this occurs with both my naked eye and with glasses).
My vision is generally okay, but I also experience sudden loss of focus when reading with both eyes, which then returns to normal after a moment.
I consulted a doctor, who found slight edema at the edge of the macula and mild cataracts, but stated that the blurriness in my left eye is not caused by the edema at the macular edge, as it is not in the central area.
The doctor suggested that the blurriness is due to pigmentary retinopathy affecting a small part of the macula.
I would like to ask if it is completely impossible for the blurriness to be caused by edema at the edge of the macula? Should I seek opinions from additional doctors? Thank you for your response.

wúlì gǎn, 20~29 year old female. Ask Date: 2015/09/30

Dr. Wang Zhishun reply Ophthalmology

Hello, I believe you have already undergone OCT and FAG examinations.
If the central macula is not affected, then the chances of vision impairment are low.
Symptoms of retinitis pigmentosa can be multifaceted, and edema is just one small aspect; it is better to consider the entire ocular system.

Reply Date: 2015/09/30

More Info

Retinitis Pigmentosa (RP) is a group of genetic disorders that lead to the progressive degeneration of the retina, particularly affecting the photoreceptors (rods and cones) responsible for vision. Patients with RP often experience night blindness and peripheral vision loss, which can progress to tunnel vision and, in some cases, complete vision loss over time. Your experience of having poor night vision and reduced visual acuity in both eyes aligns with the typical symptoms of RP.

Regarding your recent symptoms, including the blurriness and distortion of letters, it is essential to consider several factors. The presence of edema (swelling) at the edge of the macula, as noted by your doctor, could potentially contribute to visual disturbances. While the edema might not directly affect the central vision, it can still lead to fluctuations in visual clarity and distortion, especially if it is near the macula, which is crucial for detailed vision. The fact that you also have a mild cataract could further complicate your visual symptoms, as cataracts can cause blurriness and distortion in vision.

Your description of seeing letters that appear to overlap or shift could be indicative of several issues. It is possible that the edema is causing some distortion, but it is also plausible that the RP is affecting your macula, leading to the symptoms you are experiencing. The macula is responsible for sharp central vision, and any involvement of this area due to RP could lead to the visual disturbances you are describing.

In terms of whether the edema could be the sole cause of your symptoms, it is important to note that both conditions (the edema and RP) can coexist and contribute to your visual issues. The fact that your doctor indicated that the left eye's blurriness is not solely due to the edema suggests that they are considering the overall impact of RP on your vision. However, if you feel uncertain about the diagnosis or the treatment plan, seeking a second opinion from another ophthalmologist or a retinal specialist could provide additional clarity and reassurance.

It is also worth mentioning that managing RP involves regular monitoring and potentially exploring options such as low vision aids or rehabilitation services to help cope with vision loss. Genetic counseling may also be beneficial, especially if there is a family history of RP, as it can provide insights into the nature of the condition and potential future implications.

In summary, your symptoms could stem from a combination of retinitis pigmentosa and the mild edema at the macula. While your doctor has provided a reasonable explanation, if you have lingering doubts, consulting with additional specialists may help you feel more confident in your understanding and management of your condition. Regular follow-ups are crucial in monitoring the progression of RP and addressing any new symptoms that may arise.

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