My appointment with Dr. Latkany

[Angela]

After seeing 10+ doctors, I decided to spend the money on Dr. Latkany (I don't have health insurance). It was expensive but I don't regret it. First of all his staff is very nice. One girl in particular named Desiree who asks the pre consultation questions, made a very nervous me feel very at ease. Dr. Latkany was VERY warm and knew right away (I wear my heart on my sleeve) that I was upset about what is going on with me. He asked me what I have been experiencing and then examined me. He also told me that he could see that my eyelids are swollen from 4 ft away and I thought, FINALLY, a doctor who agrees with me! Upon examining me, he told me that he could tell that my MGD is caused by the skin problems that I've had for 14 years. He says that my oily skin and eyelid problem is one in the same. He said that the level of swelling I am experiencing is a little curious to him, and that he believes there is a component of allergies involved, whether it is food or environmental. He examined my meibomian glands and told me that none of them were closed which is a very good thing, he expressed them and said he had no trouble and it is mainly the quality of oil that is problematic. It's white and clumpy. We discussed my use of Accutane and he said that he sees TONS of Accutane users who have atrophied glands and that I am lucky to not be at that stage.

As for improving my condition, he told me that I must find out what is triggering the swelling because in his opinion there is no doubt an underlying cause. He told me to discontinue any warm compresses and lid scrubs because that will only do more harm than good while the swelling is this extreme. Instead, I am to use cold compresses for 1 minute, 5 times per day. Medicines I should continue are doxycycline 100mg, though he thinks I should stop in a week, pataday eye drops (for the possible presence of allergies), and to restart FML ointment. I asked him if I should continue using Fish Oil and he told me that while it is very good for people with dry eyes, it will probably not help me, especially with my skin already being very oily. He suggested using tumeric as it may be helpful with the inflammation.

The thing that kind of scares me is that in the beginning of all of this which started at the end of February, I'd only had eyelash loss and was using the FML ointment for 10 days before I woke up with swollen eyelid margins. It's since gotten MUCH worse so I am nervous about using the FML but I'm of course going to follow his advice. He gave me a card for the allergist he would like me to see, but I have no idea how I am going to afford this without insurance. He told me I could tell him (the allergist) that I am a good friend of his and maybe he'd give me a good discount. That was very nice of him to offer!

Anyway to be 100% honest I am still not feeling much better, because I feel that I am still at square one. He, like 10 other doctors, thinks that there is an underlying cause and I don't have the insurance or money to continue seeing different specialists until I figure out what that cause is. My eyelids look so bad...the skin is thick and swollen and has folds that make my eyes look droopy. As far as how they feel, they are heavy and a struggle to keep open..it makes me feel constantly tired and I feel sick looking at myself, it's like looking at a stranger. Also, I feel that the longer the swelling persists, the less likely it is that my eyes will ever look somewhat normal again. Not only that, but if I don't get my glands in check I will likely develop dry eyes, which I fortunately don't have yet. Key word ladies and gents, YET. My eyes are a mess.

If anyone is actually reading this, do you have any advice for a case of MGD like mine where it is mainly related to skin (acne, rosacea, seb derm)? I have stopped use of all products apart from Head N Shoulders shampoo and I use Occusoft lid scrubs. Also, I know that allergies can cause eye swelling and discharge, but I wonder if it can cause oily skin? If I do have allergies, I'm leaning toward it being from food..because I have always had gastro issues. I got diagnosed with gastritis a few years ago but the doc wanted to do a colonoscopy for further investigation and that's when I stopped seeing him lol. Not sure that would have showed allergies anyway?

I guess my first step will have to be process of elimination. My absolute favorite things to ingest are cheese and pasta, so knowing my luck...if I had food allergies it would be to something that I love. I will start with dairy and see if I notice any differences.

I'm feeling really sad =(

I guess I drifted away from the point of this post which was to say that Dr. Latkany is a really nice doctor lol. He spent a LOT of time with me and when I walked out he had a full room full of patients. I also shouted out DRYEYEZONE Basically he confirmed everything I already knew, but it was good to discuss it with a doctor who is specialized in this particular condition. I will definitely stick with him as a doctor and see him whenever I can afford to. I recommend him to anyone that is in or around the New York area.

Thanks for listening!

-Ange

[bp77]

please let us know if the cold comp really works. I have the swelling problem too, I hope u feel better soon.

[littlemermaid]

Wow, Angela, what an interesting post. I felt like I was there with you, thank you so much.

[tearless2]

I am sorry you are having a hard time getting the allergy appointments that you need. Do you think if you went to some sort of free clinic that you could get some allergy testing done. You mentioned always having gastro issues, have you ever been tested for celiac?

Sometimes, even if you are tested, a blood test may not indicate a gluten sensitivity but people still have them. For food sensitivities and allergies, an elimination diet is really the best way to see if something is causing you problems. My naturopath says in her experience, the top three foods that can cause inflammation are gluten, dairy, and sugar.

I hope you can find the source of your inflammation and get some relief.

[Angela]

please let us know if the cold comp really works. I have the swelling problem too, I hope u feel better soon.

I am sorry to hear that you have the problem too. Has yours ever gotten better? My lids swelled up and have stayed this way for almost 3 months. How long have you had swelling? I'm so afraid my eyelids will always look like this =( I can't go on like this....

[Angela]

I am sorry you are having a hard time getting the allergy appointments that you need. Do you think if you went to some sort of free clinic that you could get some allergy testing done. You mentioned always having gastro issues, have you ever been tested for celiac?

Sometimes, even if you are tested, a blood test may not indicate a gluten sensitivity but people still have them. For food sensitivities and allergies, an elimination diet is really the best way to see if something is causing you problems. My naturopath says in her experience, the top three foods that can cause inflammation are gluten, dairy, and sugar.

I hope you can find the source of your inflammation and get some relief.

Thank you for writing. I don't know of any free clinics that do allergy testing. I called the doctor that Latkany suggested and an appointment is $250, while basic testing (not included) starts at $800. I have to figure something out because this is literally killing me. I am clinically depressed because of this and before this happened I was a very very happy girl. And I was pretty as stupid as that sounds. Conceited? No. Just happy with my looks and now it's the complete opposite. It's like I've lost my entire identity. The swelling is very very bad.

I have considered celiac..does it cause eyelid swelling? I guess if it is an inflammatory disease than it might. The thing with trying the diet on my own without knowing if I need to, is that I'm very very thin. I lost a great deal of weight after using Accutane a year and a half ago, and ever since the onset of these eye problems I have had a lack of appetite. The doxycycline does not help. I've lost way too much and I'm frail, so I'd have to get some kind of confirmation before cutting out food. Especially because I'm a pasta (Italian) girl so it's basically all I eat.

Last night I was in so much pain that it hurt when I moved my face in any way. And this morning when i woke up I could barely see my pupil. =:

[Angela]

Wow, Angela, what an interesting post. I felt like I was there with you, thank you so much.

You really are a sweetheart. I've read SO many of your posts and you're a very helpful person. I am sorry that your daughter suffers with this, she is very lucky to have a parent that is as persistent as you are with finding a way to give her as much relief as possible.

[MaryVa61]

Hi Ange. I'm so glad you had such a god experience with Dr. L. I can empathize with what you'd experienced prior to seeing him, with doctors not understanding the pain, fatigue, and emotions of dealing with multiple eye problems that the doctors can't seem to figure out (and don't always seem interested in figuring out).

Sorry this is such a long post, but I hope it's helpful to you or someone. Don't skip the end, it could help with your financial situation.

Your description of your eyes sounds very similar to my most recent new eye problem. I already had dry eyes and blephatiris and went through years of SLK, but had trouble convincing doctors that something new was going on and was very painful. A corneal specialist I saw mentioned the possibility of allergy. I'd been seeing an allergist for years (for rhinitis, cough...) who'd always said that while I have allergy symptoms I didn't test positive so I didn't have allergies, even though they run in my family. But I went to him anyway and discussed the eye thing.

The allegist explained the different allergy types. I think there are 4 to 7 different types of "allergy". He and many other allergists only diagnose and treat one type (type 1) and that's the kind that allergy skin prick tests and blood tests are for. He suggested I see a dermatologist to get patch tests (for type 3 or 4?). When I saw a derm she had a negative attitude. I don't think she liked some other doctor deciding what she should do to diagnose a patient. Had a little arrogance. However, she let her very nice PA do the tests and 3 were positive. Besides nickel there was formaldehyde and quaternium-15. She gave me a list of all the different names used on ingredient labels for these 2, which are in lots of personal care and household products (and Aspartame) and I was amazed at how much of those 2 chemicals was in my home. I badly needed new glasses so I also ended up getting the new ones with titanium frames to avoid nickel.

It took a while to replace all those products because it was tough to find brands without those ph stabilizers, antiseptics and preservatives. I found websites that listed ingredients so I could decide ahead what products to try and then went to "healthy stores" like Whole Foods, The Vitamin Shoppe, local compounding pharmacies, and also ordered online. Some things labeled "natural", "gentle", "calming" or "skin relief" had formaldehyde in them, under a different name, so I had to be really careful. I had to change my uncented detergents to other "natural" ones, got chemical free reusable static control sheets, replaced almost everything used on my face, hair and skin and most houshold cleaners.

She gave me print outs from Tru-Test that gave the different names to avoid on ingredient lists. The Tru-Test website lists the 29 most common skin allergens and you can click on them for a description of the kinds of things to avoid, all the names and a few specific product examples that are safe or unsafe if you have that allergy. She suggested reading about skin allergies online at reputable sites, like NIH, Mayo Clinic, etc. In the process I figured out that my old Cocoa Butter allergy was still causing me trouble because I was eating it and didn't know it. it's used in a lot of chocolate products and some pastries and baked goods.

It is possible to do skin allergy tests on yourself if you can't afford them at the doctor's, but you have to be careful and it would be very time consuming. There are insturctions online. I don't remember if the insturctions were on Tru-Test' site or elsewhere but you could google it. You'd need to first try paper medical tape (from your local pharmacy) to hold the guaze in place because a lot of people are allergic to adhesives on the other tapes.

I hope you can figure out whatever is aggravating your eyes. It can be a real chore to explore all the possibilities, but it's worth it. If I hadn't finally figured it out I think I would have lost my mind. Life can get better for you. I don't have that eye problem anymore. Now I'm just back to dealing with very dry eyes.

Mary in VA