Patient Comments: Vitiligo - Diagnosis

Question:

How was your vitiligo diagnosed? Submit Your Comment

Comment from: Phew, 3-6 Female (Patient) Published: November 22

My problem started a year ago. I'm passing long loud gas every five minutes. I watch my diet so I know it's not that. I get up in the morning, I have a bottle of water, and it starts. So embarrassing. I also find it's with pain; left side just below ribs.

Comment from: Diane, Female (Caregiver) Published: April 12

I am 46, I was diagnosed with hypothyroidism (Hashimoto's thyroiditis) in 2014. My main symptoms were extreme tiredness, weight gain, brain fog, depression, difficulty concentrating or having any real interest in anything, tinnitus, feeling cold, vitiligo, hair loss and withdrawal from social activity, patches of dry skin, pressure behind eyes, itchy and sensitive skin around eyes, worsening vision, dizziness, itchy arms and legs, water retention, aches and pains. I started on 50 mcg of levothyroxine and am now on 125 mcg. I don't feel much better, I am hoping my last increase of levothyroxine helps and I have also started to supplement iron, B12, vitamin C, vitamin D3 and magnesium. Apparently it is important to get all nutrient levels up in order to get the best from the thyroid medications. I am moody, impatient and constantly tired, cold and hungry. I do have hope as I know some people feel better once they have started to look after their diet, etc. I have cut right down on gluten and the bloating has improved, I now have to watch the goitrogenic foods and aim to cut down on dairy. It is a total lifestyle change, and a much lesser life to be honest. I cry on a regular basis for no real reason and eat like an elephant. I have gained 3 and a half stone. When I get a bit of energy I may look into natural thyroid hormone replacement but at the moment there is so much information to take in so slowly does it.

Comment from: Amit K. D., 35-44 Female (Caregiver) Published: March 29

I have been suffering right side testicular pain. It first started in 2010. I had visited the hospital. In examination of color Doppler (USG) of testis there was no problem. The report was normal. They advised not to ride motor cycle with two riders. Since then there was no problem till February 2016. But now the pain has returned. I have visited a surgeon, and he has given me only light dose pain killer. He examined physically and told me that there is no swelling or any other problem. The eosinophil, cholesterol, urine culture, and sugar reports are normal. But sometime the pain is going on basically at night.

Comment from: cay, 13-18 Female (Patient) Published: March 07

I was diagnosed with vitiligo when I was in second Grade i have spots on my Knees, fingers, hands, wrists, upper torso, tummy, around my hips, knees, feet and starting to get some on my face, I am now a Senior in high school. In Elementary and Junior High kids would stare and always ask me what I had and I never knew how to answer them but "oh I lost the color in my skin." I used to be ashamed of my spots. Now I am older I have accepted that they are part of me and they make me different than everyone else I know. Everyone who asks me what I have now I tell them and they think it's the coolest thing. I've embraced my vitiligo, and I hope everyone who has it does as well. I am just really thankful that I have a Disease that will not kill me or that has affected me physically at all. I consider myself lucky.

Comment from: A.M.H., 55-64 Female Published: September 14

I am a 62 year old woman in great health. I was first diagnosed at about 5 years of age. I had patches of vitiligo throughout my life, especially noticeable during my mid teens. At the age of 40 I lost all my patches and I am now perfectly white all over. The patches are no longer visible. A Doctor that I saw in Cuba said that I had universal vitiligo, which meant my whole body is covered. I now just have a very porcelain white skin. I try to stay out of the sun at peak times, because I have had some severe sun burns. I was never a sun worshipper so perhaps that helped somewhat.

Comment from: the girl, 19-24 Female (Patient) Published: March 17

I discovered my vitiligo when I was 18 years old. At first my mother blamed me for it, she thought I probably used bleach and I felt alone because I knew that I didn't do that. I have it in my vagina, and that's one of the reasons why I'm still a virgin.

Comment from: pearlrose, 45-54 Female (Patient) Published: March 03

About 6 months ago I went to the doctor. He said my pigment just stopped working and there is really nothing out there that will help my vitiligo. I am really confused by this. I am an outdoors person so it looks horrible and I am saddened by this. Nothing works.

Comment from: acceptance, 55-64 Female (Patient) Published: June 08

I'm a 55-year-old female with vitiligo. I have had a couple of small spots since my late 30s. About three years ago, it took off, and now I am covered with large areas of white. I tried light treatments, skin ointments and pills prescribed by a dermatologist to no avail. Now I even have some on my face. Linda Seidel makeup helps cover up the facial spots (you can order it online only). I used to be so embarrassed of it. Now I'm just concerned since I had squamous cell skin cancer on a white patch on my back less than a year ago.

Comment from: Melluna, 25-34 Female (Patient) Published: January 21

My vitiligo was diagnosed as a child, and I have a great aunt on my paternal side that has it as well. Hers is more widespread and more noticeable; however, I am so light in skin color that you sometimes cannot tell I even have it unless I have gotten some sun. I also have what I would consider premature graying of the hair, with my first white hairs showing up at around age 13. My vitiligo has not spread much since childhood, and the most recent manifestations are the areas around moles losing pigment, then the moles themselves losing pigment and all but disappearing to the eye.

Comment from: zai, 25-34 Female (Patient) Published: April 11

I was just diagnosed yesterday with vitiligo. I have small patches on my hands, elbows and feet. Most people here have had it a long time. And it makes me happy to see so many people embrace it as beauty. I hope I get to that point quickly. I"m not sad, but just a little scared if it spreads more. I started some creams today.

Comment from: Roger, 65-74 Male (Patient) Published: October 15

On returning from Spain where I spend a lot of time, I developed white itchy patches on the backs of my hands. It was initially diagnosed as 'prickly heat', later on the doctor told me it was 'vitiligo' and I was getting too much sun.

Comment from: Roger, 65-74 Male (Patient) Published: October 08

On returning from Spain where I spend a lot of time, I developed white itchy patches on the backs of my hands. It was initially diagnosed as 'prickly heat,' later on the doctor told me it was vitiligo and I was getting too much sun. It causes no real problems but looks awful. I was also told it could be related to shock as I had fallen down stairs which did shake me up badly. I now have to wear gloves to protect my hands from the sun, as nothing else works.

Comment from: Nikki, 35-44 Female (Patient) Published: August 16

This is now my fourth summer with vitiligo. I say summer because that's when its the hardest to have this type of disease due to the sun. Once I had gotten it, it spread very quickly throughout my body. I have to say that without my mother I have no clue how I would have been able to step out of my house. She has had this disease for about 27 years now. I have noticed that my son has two patches on his back. I am scared for him but at the same time I know I will be here for him as my mom was. I just began UVB raise and an ointment. If it works it works, if not oh well. I have lived with it for this long already. My husband and family are the best support!! We still go to Mexico every year!! ;)

Comment from: Kevin, 35-44 Male (Patient) Published: August 16

I just got diagnosed today. Ugh.I have read that there really is not an effective cure or slow-down. It just is what it is. Well, onward.

Comment from: TISHA, 45-54 Female (Patient) Published: July 24

I started with vitiligo when I was 6 yrs old, right after a diagnoises of Lukemia. It appeared on my ankles, elbows,fingers, basically every joint area had these blotches. I was told back then there was no cure and to avoid the sun, after many years of no beach, no sun, as a teen I said forget that and exposed my vitiligo to the sun. Over the years it reversed, turning into brown freckle like spots, most areas are all gone. the weirdest part is after the vitiligo appeared I never ever tested positive for Leukemia again. EVER I am now 45 yrs old and the doctors back then couldn't explain this. I wonder if there is a connection?

Comment from: 25-34 Female (Patient) Published: November 21

I was diagnosed at age 19. At first it used to bother me. I had a small patch under my arms. Now that I am 26 I have it under my arms, my hands, my breasts, my pubic area and its now developing around my lips and eyes. I honestly dont let it bother me. I'm not worried about it. It is what it is. I have tattoos, so I guess I am a little less self conscious than most people. But its all about your attitude about it. If people are too ignorant to know and they just stare.. let them. Chances are they arent worth it anyway.

Comment from: Rose, 45-54 Female (Patient) Published: September 14

At the age of 49 I started having white spots in my pubic area. About a year later white spots start appearing on my chin, cheeks, and forehead. It's been about 3 years now and my face, neck, pubic area all lost its pigmentation. I was diagnosed by two dermatologist who used the ultraviolet light and told me it's Vitiligo. I tried to conceal as much of my face as possible with concealing make up.

Comment from: jalsql, 35-44 Male (Patient) Published: December 03

I have had vitiligo since I was 17. It is on my knees, fingers, elbows, feet and eyelids. It started as a small dot on the first joint of my left thumb. the patches are almost the same on my right/left areas of my body. I visited a dermatologist and he confirmed the patches to be vitiligo. I am now 40 years old. My patches are starting to disappear. And the only thing I have done for the past year is taken up a vegan diet and walk 1 hour per day. I was 350 lb one year ago I am now 280 (goal is 240). I am looking for a nice forum/blog to post some pics and more info.

Comment from: arabianqueen1, 35-44 Female (Patient) Published: June 06

I'm 44 years old and I was diagnosed at 34 years old and I was so depressed and tried to hide it, so I went for treatment and nothing worked. Couldn't go to the beach anymore or swimming pools although that was my life in summer season the outside. I had to learn to cover it up with all kinds of makeup but now I except it and the best thing that helped me is sunless tan lotions and now days you could get air brushed but I can't afford it.

Comment from: checkerboy, 13-18 Male (Caregiver) Published: July 06

My son developed a white patch on his little finger which went unnoticed for quite some time. I finally took him to the doctor when it spread to another finger. He is now 18 years old and has discoloration on his face, hands, feet and elbows, though he has brown skin, he still wears shorts and does not shun any type of activity. He has said it is not life threatening and life is to be lived. He has friends who understand what he has and treat him as normal. People do stare at him sometimes but he usually stares back. His one problem is that he would prefer if people asked a question instead of stare. The key word is acceptance of who you and not allowing the world to judge you and also plenty of sun block!

Comment from: me, 19-24 Male (Patient) Published: January 31

Hello I am 23 years old and I was diagnosed with vitigalo yesterday. I am so depressed. I don't know what to do. I have it on my finger a tiny bit and one on my chin. I looks like is spreading and I just notice one on my butt cheek. I can't even sleep thinking about I feel like dying.

Comment from: Tiara, 13-18 Female (Patient) Published: January 24

My doctor prescribed me with eleuphrat and other creams which worked over the short time that I used them until they caused my skin to get oily and scarred. Now I have learned to just live with it. I'm slowly getting over it, but it still sits in the back of my mind all the time.

Comment from: Joseph, 25-34 Male (Patient) Published: September 07

I had vitiligo at the very early stage when I was 16. Strange as it may sound I used my own urine and smeared it daily on the affected part. Within a week the spots miraculously disappeared and they never returned. I am 27 now and no sign of it, please try that. When my father told me to use my urine I was disgusted, but it worked.

Comment from: Mar, 25-34 Male (Caregiver) Published: August 15

Someone in my family was recently diagnosed with vitiligo, he is 25 years old. He has small white patches on his hands, none on his face. We are working on getting mental counseling for him, so far he is doing good mentally but then again he does not have large patches. If it spreads to his face I hope he is prepared. Thanks to all of you for sharing your story so I can be supportive to this family member with this condition and ready to deal with any rude people.

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