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I believe you mean you have epithelial basement membrane dystrophy, also known as map-dot-fingerprint. If this is not what you have please let me know. If this is what you have, I can empathize with you. This is a tough dystrophy to have as it causes lots of symptoms, essentially many of the symptoms people with Dry Eye Syndrome get. I dont think the strep urine infections and the eyes have a link at all. It seems your eyelids are getting swollen, and I am willing to bet this this blepharitis. Blepharitis is an infection of the lids and lashes. Common findings in someone with blepharitis can range from subtle collections of yellow colored debris or flakes on the lashes to not so subtle crusting, clumping on lashes, red eyelid borders with thickening of the lids and oil gland orifices. I am going to try to give you all the different things someone with your eye problems should be doing:
For the lids.....you should be doing the following:
The treatment consists of 3 things and must be done consistently for effective control and cure.
First, you take a a warm wash cloth or warm compress and lay it across your lids for 5 minutes (heat must be applied for 5 mins). This helps the oil glands get moving again and helps losen up the debris on the lashes.
Next you take some baby shampoo and mix it with water (50/50) and use a wash cloth to rub across and cleanse the skin and lashes. This helps remove the debris.
Last, you apply antibiotic ointment, like erythromycin ophthalmic ointment to the base of the lashes.
This regimen helps get rid of or control the infection in about 2 weeks. You may try this without the antibiotic ointment first, but may need to talk to your doctor for a prescription for the erythromycin ophthalmic ointment if your symptoms do not resolve fully.
For the MDF you should be doing the following:
frequent use of preservative free artificial tears such as Celluvisc by Refresh, we are talking every 1-2 hours
your doc should consider using Restasis which is cyclosporine and this will help you produce more tears
Muro 128 can be helpful but typically does not do a whole lot
For people with bad MDP and lots of surface irregularity, the option of corneal scraping or PTK (phototherapeutic keratectomy) should be considered. The first is a rather simple in office procedure where the most anterior layer of the cornea is scraped away with the hopes it heals more smoothly. The PTK is a lasik like laser procedure that lasers away the surface irregularity. Both of these can help reduce your MDF symptoms.
I wish you well, best of luck, please dont hesitate to reply me with any more concerns you may have, Dr. Stevens, Ophthalmologist
Hello Doctor Stevens,
thank you for your detailed answer, I am going to do it rightaway. I have Eritromycin home from previous treatments, I am going to use it now. I asked my doctor about the removal with lasik or surgical and he said, that my skin is to fragile to do it, what was of course disappointing for me, it looks, like I never get it rid! Could you say your opinion about this and how long does it take to heal it with eydrops only, or if it heals at all?
if it is so severe, it really may never heal with drops only. Is your doctor a cornea specialist, if not I would ask for a referral to one. If he/she is a cornea specialist, perhaps a second opinion may not be a bad idea. What do you think?
Hi doctor Stevens,
I appreciate your answer. I saw 4 doctors since December last year, one of themwas cornea specialist,, at the time he saw me the disease got better, he claimed, he barely sees anything in the eye and frankly, I believed it is over myself. He left for vacation in the meantime and my eyes got worse, than ever before, I will see him in two weeks, but I will get second opinion from another , cornea specialist anyway, I am really very sick now and I am deeply worried, that I might loose my vision, which is still good.
I will show your opinion about Restasis to my doctor, I am using Systane now 8 times a day and the Prednisolone and as above, it doesn,t do much for me.
Sounds goodCustomer Before prescribing restasis, the doc should do a quick test called Shirmers to see if you produce sufficient amounts of tears. That will help determine if you need restasis. I hope you get some relief, please do keep me updated, Dr. Stevens
PS, MDF rarely leads to significant vision loss
thank you for your answers, your information helped me a lot already. How could I keep; in touch with you in the future?
if you post a question with my name in the title, I will see it here and can respond. I think you can always come back and reply here in this question later on as well. There are only a handful ophthalmologists on this site so far so I am not too far away, Sincerly
I am applying the warm compresses and Erytromycin 3x times a day, it feels good, but my eyelids are still swollen, it needs time I guess. I am getting very disagreable feeling in my eyes, like they would be pulling out and moving constantly when I close my eyes, as well pressure between my eybrows, typically in the nightime, can you tell, what is causing it and any help?
I am pretty certain the sensation when you close your eyes is surface irregularity from the MDF dystrophy. The blurring in your vision from all this is also causing considerable eye strain which in turn translates to pressure in the brows and frontal area at the end of the day. My suggestion is to work on the compresses and ointment, and lets try to control the lid issues until your cornea can be reevaluated. Please keep me posted, Dr. Stevens
my dystrophy got worse, I am in pain. I saw cornea specialist who offered me laser surgery in order to scrape my cornea and at the same time correct my vision.( I am shortsighted -6.5 . I know from previous years, that I have to many dioptries to have it corrected. The doctor did not mention, that I have cataract on my eye as well, what I was told about by another doctor, who told me, that by removing the catarct could help with my distrophy. I don't know, what to do, I am afraid, that laser surgery could damage my eye even more, even the doctor is very reknowned and has new laser equipment.
with the glasses on, do you know how good your vision is, that is, do you know your visual acuity? Also, is the prescription about same in both eyes? (-6.5 ish). Lastly, what will the costs be to do the laser with the vision correction (is it covered) ?
PS please be patient with me, I may be a while in responding
Hello Dr Stevens,
I think that the laser can be very helpful. You still have excellent vision and cataracts should technically not be an issue for a few years since you still have excellent vision. If you had poor vision, it may mean that a cataract needs to be addressed first. You had mentioned there was not enough tissue for laser when you were evaluated in the past. That may be the case with lasik where a flap is made and then the cornea is blasted away. So the thickness of the flap is taken in to consideration. The laser correction for dystrophy is a laser called PTK, photo-therapeutic keratectomy, where the top layer of the cornea is burned away with the hopes that the surface regenerates and heals in the best possible way without the dystrophy scars and lines. Since no flap is made, the thickness of the cornea is less of an issue and the treatment is more plausible even in folks with high myopia. I think the laser will help with both near sightedness and the ABMD. My only comment is that if the laser is needed to keep your eye comfortable and seeing well, it would be a covered benefit in some health plans (i know in my HMO it would be). Now, that would not include the refractive portion. In essense it would be covered to burn the surface away in the same manner but not any deeper to correct the nearsightedness. It is a big chunk of change and if you dont mind glasses this is worth re-inquiring about and discussing. Youwould simply ask "what if I needed the laser just to smooth my cornea and decrease my symptoms, and not to fix the near sightedness, since it is medically necessary (this can be argued) should it not be covered?? " It was nice hearing from you as well, I wish you well, keep me posted or ask anything else you need clarification on, Dr. Stevens