27 January 2011 | Posted inBlog News & Updates, Cool Stuff, Pictures, Weird
MEWDS
I should have played the lottery. I probably would win by now… Why?! Based on what?!
This is the second time I was diagnosed with a weird eye disease (first being a corneal ulcer, odds at 23 per 100,000). And when the doctors all call each other in just to see how interesting/what the hell it is, you know it’s special.
Right before Thanksgiving, I noticed that my right eye was a bit blurry. Sort of like if you looked up into a light for a while and there are dots floating there afterwards… except my dots don’t go away. Yes, I was literally seeing dots.
After being in the ophthalmology department for three hours, they finally diagnosed me with Multiple Evanescent White Dot Syndrome or MEWDS for short. The doctors (I went through FOUR that first day and few more in the follow up appointments) have no idea how it happens, why it happens, or how to cure it. They just know this occurs most frequently in healthy females between the ages of twenty and forty with severe nearsightedness, the lucky person may have just recovered from a cold or flu, the dots disappear on its own in four to six weeks, and it rarely comes back.
Needless to say, you know what I was thankful for last year.
Anyways, what do you do when there is nothing the doctors can do? Take pictures of my eye! It was a bit disturbing seeing pink and purple for a bit while they did the fluorescein angiogram. But I have to admit… the pictures turned out to be pretty cool!!
So this is what a healthy eye is suppose to look like…
And this is mine… As you can see the difference, uninvited dots/lesions decided to take a long vacation in my eye.
I started doing research to see if there was something that I could figure out that the doctors couldn’t as I know my medical history the best. I went on all the online forums and even joined a facebook group… it only had 23 members when I joined! Everyone said the same thing… no cure… no treatment… no idea why it happened. I felt really helpless as there was literally nothing anyone can do.
I guess it didn’t really sink in on how rare this was until my follow up appointment when the doctors told me that this only happens once or twice a year! They also asked if I was entrepreneurial and said I could probably make some good money by charging people to take a look at this rare occurrence! HA! I didn’t… but maybe I should have.
Four weeks later, I got the best Christmast gift ever.. A full recovery! 
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Play the lottery sister! Also, cool eye photos!
Glad to hear I’m not alone. This is the second time I’ve had MEWDS. The first time after seeing doctor after doctor, specialist after specialist, they say, “oh it will clear up on its own.” A diagnosis costing me only a couple thousand dollars. Soooo frustrating!
good pearl that you recovered from this experience. i still have not. its also getting worst and non of the doctors i see are able to help…it sucks lol..
I was just diagnosed today with it. How rare is it? I’m just annoyed that it is going to take that long for my vision to return to normal.
I’m a 36 yr old male in australia and was diagnosed almost 2 yrs ago. Told it would go away. Still waiting. can,t get any help as only one doctor i found even knew what it was. can anyone help me.
Hello
I am 25 years old and was diagnosed with the same syndrome (MEWDS) last Thursday.
I awoke with blurred vision after two days and did not see hardly anything of an eye.
After going to several ophthalmologists, was referred to a specialist, who made the diagnosis and is acompanhando.Realmente me is terrible this huge amount of photos and different exams and know that there is nothing to do but wait. And wait for a result that does not know what is or when it will occur …
Olá, Pérola!
Fui diagnosticada em janeiro de 2009 com MEWDS, fiz diversos exames com todos aqueles contrates e seus efeitos colaterais desgradáveis, mas apesar do diagnóstico e dos médicos dizerem que ela desapareceria, a minha ainda persiste até hoje e a mancha cega aumentou. Mas ver relatos de pessoas que ficaram boas, aumentam minhas esperanças.
This is my second time with it. I’m 3 weeks in at this point. The first time I had it was 10 years ago. I’m also told that this could develop during or after a viral infection, auto-immune disease, and even hormonal changes. I believe it might be related to hormones because the first time I had it I had just stopped taking birth control about 6 months prior. This time, I just had a baby 9 months ago. I went to my family practice doctor and had him run a scope of blood tests to try and find a virus….nothing abnormal. It is also so rare that usually only females get it between the ages of 15-50 and I am fortunate to have it twice within that age frame
and it is extremely rare for a male to develop it at all. It is the worst to have to sit and wait for this to clear up. It is also terrible to think it may never go away.
I was diagnosed in January 1986 at the age of 25. At the time, when the doctor found the dots, he was wiping away tears, because he thought I might never see normally again. Tough for a graduate student in English whose favorite hobby is reading! I was told they had no idea how long the dots would be there, or whether it would go away. They began to fade after about 2 months, and I still had the ‘whorl’ if I looked at bright lights for several years. I didn’t find out until 25 years later that i suffer from an adrenal disorder that makes me unable to fight off infections and viruses, and that their theory (in the 80′s) was that it was caused by a virus from handling infected parrots or small pets. I never had a relapse, and I’m going on 52.
And I too would like to know – HOW RARE IS IT?
Hi im 27 and have had mewdes with 6 years now i got it in 2005 adn it cleared up but it came back in 2007 and i lost the vision in my left eye at present I have only 6/60 vision. I was been treated with steroids for 6 years adn eventually when i got pregnant I gave them up with out the docters advice and Im now 19 months with a flair up in my eyes I would tell anyone who is on steroids to think about it and go dfor a 2nd opinion because some docters think steroids are the answer but the aren’t and I found it out the hard way I was 16 stoen adfter 6 years of taking them with a stomach problem because of them I am now 10 stone adn I have never felt better I am visually impared but I have learned to deal with it and im thankfull every day that i can still see to the best of my ability
I’m a 23 year old female who was just diagnosed with MEWDS and I also got a very strong reaction from my eye doctors. Its so rare, apparently! I am just wondering how much longer it will take before these flashes clear up. It’s nice to see I’m not alone!
I was wondering if those who have had MEWDS have had other issues with inflammation in other parts of their body?
I was 1st diagnosed with the dry type of AMD in 1997 at age 37 (one Dr – I saw MANY – thought it might have been MEWDS.) I’ve had several jousts of incremental vision losses in my right eye since then, and the vision losses usually followed an illness. I’ve always believed my vision losses have been caused by a reaction to a virus, but I was under the assumption that I had AMD and there was/is no cure, so I’ve just accepted and lived with the changes. Eight weeks ago I had a severe cold and I experienced another major vision loss, but this time in my left eye. This time a new Dr says it’s MEWDS and he thinks the other bouts have been MEWDS as well. The vision losses in my right eye have been permanent (incremental losses of vision without recovery since 1997), but the Dr says I’ll probably recover the vision in my left eye. I’ll keep you posted.
hey i just wanted to know where do you guys see your doctors. im from Ny and ive seen many neurologist and opthol. cant find anyone to diagnose me with what i think is mewds.
Hi Toddy.
Yes, I do have other inflammatory problems. I have MEWDS, endometriosis and migraines (with aura – which was I had hoped my MEWDS was at first). My doctors don’t know if there’s a link, but I’m pursuing it.
Do you have other inflammatory problems?
Thanks,
Clare.
I was diagnosed with MEWDS in 1998, then had a cascade of eye problems immediately after. Recurring optic neuritis, which led to optic neuropathy, and retinal disease (RPE atrophy). The strange thing was that I knew something was wrong for years before the MEWDS diagnosis, but the drs couldn’t see a problem. Then, after the MEWDS, they were able to see the rest of the problems. I suppose my eyes just got much worse then. I also have inflammatory problems. I’ve been dealing with the after-effects for a long time now.
I’ve had MEWDS for about four weeks now. I’m just shocked about how little information there is about this. I’m male which I guess makes things more rare. My lesions are apparently healing but my main symptom is crippling photophobia. I have a little visual distortion in the periphery and my affected eye is a bit dimmer than the other. But I can’t tolerate any amount of light or I’ll get a major migraine like headache. I’ve had very very minor migraines in the past but they’ve become so intense since getting the lesions. For me the symptoms started 3 weeks after being diagnosed with vestibular neuritis, and occurred simultaneously with a two week long bout of gastroenteritis and not being able to eat. Seems some virus has been attacking me, and my wife who was just diagnosed with Sudden Hearing Loss, possibly also viral and certainly coincidental. Does anyone have photosensitivity or flashing with it and does that go away as well?
Hi Clare,
Have you found any research that relates MEWDS and migraine? (re: your post of 29th March 2012) My daughter suffered a bout of MEWDs about 10 years ago, and now finds that migraine affects her much more, as does working under flourescent lighting.
I am 43 and was diagnosed with MEWDS three weeks ago – and yes, the same story, tests upon tests and a confused doctor and then the diagnosis. I am still in the healing process and it just seems so slow – but I am glad for all your comments because it really helps when someone else can relate to what’s happening to you. It was such a sudden onset – just got up on morning and all I could see with my left eye was grey patch – but as the days are going by the grey patch is getting smaller and more translucent and I am so grateful for that. I do have a lot of pain by the afternoon around that eye. I hope it’s all over soon (just like my medical insurance benefits ) – Mrs P – South Africa
I was diagnosed with MEWDS last week and the doctors do not know what causes it. Wondering if anyone was diagnosed a few weeks after receiving the flu shot? Some post mention this appears after a viral infection, which I haven’t been feeling sick, but I was forced to take a mandatory flu shot at work a few weeks before losing sight in my left eye.
I have not been diagnosed yet but sounds to me just like MEWDS. I have 3 grey blind spots in my left eye, the larger one with flashing light in it more in the evening and morning. It’s very dark at those times too. Very light sensitive, but outside with sunglasses on is the least stressful place for me.
I got a very sore neck on the same side two days before my eye problem so just assumed they were related but have been told they couldn’t be.
I have just had a Fluorescein test done as other test have been inconclusive, waiting for the results but the man doing it showed me the some of the photos and I have a large number of small white dots over most of one of the last photo’s(retina).
How rare is this?
This problem is generally caused by exposure to mercury such as old fillings