macular degeneration

[meeegun]

i was told today by an opthamologist that i have areas of depigmentation on my retinas that could indicate macular degeneration. is there anyone else here who has this, especially if you are in your early 30's like me? i thought MS was enough, but i guess not. also, should i see a neuro opthamologist for a second opinion? is there anyone here who knows of a good one in the bay area of california?

[Redwings]

should i see a neuro opthamologist for a second opinion?

No. Depigmentation of the retina is most properly evaluated by a retinal specialist, not a neuro-ophth. Neuro-ophths mostly work with optic nerves and brains and leave retinas to the retinal specialists (with the exception of neuro-ophths who do retinal work part-time).

A second opinion by a retinal specialist is a good idea, because macular degeneration is extremely rare in people under 50. Depigmentation in a younger population is more likely due to a different cause.

[jcrain9663]

.You might consider getting tested for diabetes. My dh found out he is diabetic only because an optometrist saw suspicious signs in his eyes. He already has had two laser sugeries before 45. Now his diabetes is under control, he has been stable for about ten years or so.

[Redwings]

Retinal depigmentation is not a sign of diabetes or diabetic eye disease. They are completely different conditions.

Retinal depigmentation can be a sign of macular degeneration. However, as I said before, macular degeneration is extremely rare in people under 50.

meeegun, your ophthalmologist knows how rare it would be for someone in their early 30's to have macular degeneration, so the mystery here is why s/he didn't use that knowledge to further work you up her/himself. Since that didn't happen, a workup by a retinal specialist is a good idea. If you don't mind going to a teaching clinic, you might consider the Ophthalmology Department at UCSF.

[meeegun]

thanks redwings, after reading your recommendation about a retinal specialist i fired up the google machine and started searching. i came across the UCSF clinic, however, i have used thier MS clinic and i have to say that even though it is clearly cutting edge and that they are at the forefront of research, access is a serious problem. even getting a phone call returned or an appointment made for a reasonable time frame (ie: not in 6 months from now) is difficult.

whether right or wrong, this experience has biased me against using them for my eyes. i found another retinal specialist group called west coast retina. at this point i am debating, but most likely, it will come down to whether i am able to get a timely appointment made.

i know it is rare to have this develop at such a young age, however, i cannot find any information on other causes of retinal depigmentation besides from medications that i have never taken. he said that the spots on my eyes could develop into macular degeneration and from my (google based) understanding of this, i take what he said to mean that i have developed hard drusen that he wants to keep track of.

i would say that overall his dr/pt skills were seriously lacking. i'm not sure why he would even bring up something as devastating as macular degeneration to a person in thier 30's without bothering to take the time to explain exactly what he is seeing and exactly what it means. he also never mentioned a retinal specialist. and told me to take vitamins and wear sunglasses.

he also did visual field testing and summed up the results with "the right eye looks great, and the left eye...well, i would consider that normal." ugh. hello?! i have MS! ever heard of optic neuritis?! seems like knowing any deficit in my visual field would be important baseline information... also, he is the first doctor that has told me i do not have double vision and tested for it using simple eye tracking tests. and he never even discussed with me the dizziness i have been experiencing lately when reading while standing.

maybe he's completely wrong about the macular degeneration. i'm going to hope this is the case!

[Redwings]

Hi meeegun:
The retinal group you found is probably fine.

Drusen are a routine exam. In Southern California, 6 weeks seems to be about the maximum time for a routine insurance referral to a retinal specialist, so hopefully you can get an appointment within that kind of time frame. If you're a self-referred PPO patient, 2 to 3 weeks might be possible.

I have to agree with you about your ophthalmologist's less-than-sparkling patient-management skills. A couple of hard drusen are not really macular degeneration (they're risk factors/precursors), and -- if that's what you have -- you aren't the first person in their 30's to have a couple of them. But the kind of explanation you got short-changed you from being able to put the findings into context and to know how they apply to your vision and your life.

Seeing a retinal specialist will of course give you another opinion about what's going on in your maculas. But maybe more important, it will give you the opportunity to get a better explanation of the meaning of it for someone your age. Let's hope the retinal specialist has better communication skills than the ophthalmologist you saw.

[kellygrn]

It runs in my family

My sister found out she had it at age 42. She has had the injections & it is stable for now.

My father found out he had it at ago 55. When his mom had it there was no name for the disease.

I don't have it & hopefully never will.

About getting a timely appointment, call at least once a week to sleep if anyone cancels. You will never now unless you try.

KK

[Redwings]

Wow, meeegun. It's a shame to see what the result of your ophthalmology visit caused. It seems that some retinal depigmentation somehow morphed into you having macular degeneration, when so far what you might have are some drusen. It sent to you an MS forum -- not even an eye conditions forum -- to get stories about lasers and injections and conditions that don't even apply to you.

The ophthalmologist you saw didn't mention a retinal specialist because the presence of a few drusen (if that's what you have, which any eye doctor can monitor) doesn't require a specialist. But if you want a second opinion, a retinal specialist is the most appropriate choice. I'm thinking that would be a good idea so you can find out what condition you do have and not waste any of your precious time or energy on speculation.

[meeegun]

redwings,

i have no idea what i have, i am merely speculating because the doc didn't take the time to explain what he was seeing. i came here because i feel comfortable with the people here and knew i would be steered in an appropriate direction. I am going to follow up with a retinal specialist, and hope that he was wrong/being overly dramatic. even if the retinal specialist tells me that i don't need to be followed there, i will not be returning to that opthamologist. figures, he is the first doctor i didn't yelp and i am extremely disappointed!