Getting a Proper Diagnosis (Warning.. really long.)
Joined: 17 Jul 2006
| Posted: Mon Oct 16, 2006 8:53 pm Post subject: Getting a Proper Diagnosis (Warning.. really long.) | |
| Howdy all,
Some people might remember me from the postings and photos I put up in the photo section during the summer when I was trying to determine if I had Rosacea, some condition similar to it, or absolutely nothing. For those that don't, I'll go over my condition once again. I'm a fair-skinned individual, probably type II skin, as I don't burn that easily in spite of being extremely pale. For as long as I can remember, my face has had "color" to it, the very sort some babies/children have. I'm 23, and I've had it my whole life, so I never assumed it was anything to be concerned about. It was barely noticable in indoor-lighting, and in sunlight, and only seemed to stand out in floursecent lighting. I never noticed any sort of "trigger" to a more red face after exercise, sex, embarrassment, or anything else of the sort. I was familiar with Rosacea because I had an acne problem that peaked around age 19-20, and I assumed that because I was no longer a teenager, this must be "adult acne." In my attempts to find more out about adult acne, I found out about Rosacea, though the pictures most commonly given to illustrate someone with Rosacea looked nothing like what I had. I assumed I was in the clear. Furthermore, all literature said it more commonly affected females, and most commonly the 30-50 age group. When I was in my sophomore year of college, age 22, (only a year ago) I started taking Accutane to try to clear up my acne. About a month into treatment, I noticed that my face was getting kind of red around the bridge of my nose, and on my cheeks.. but my friends and girlfriend and even my dermatologist all dismissed it, saying it wasn't, and they couldn't notice any difference. My girlfriend even made me feel like crap by telling me that "my face was always a little red." In my research and postings on www.acne.org, it seems as though MANY people experienced facial redness while on Accutane, in a very similar pattern to the redness experienced by Rosacea sufferers (across the nose and upper cheeks.) I chalked this redness up to the Accutane, and eventually forgot about it. During this period, I never noticed any increased redness in my complexion after doing various things, but I now realize it's possible I just never noticed. Drinking though (which I did frequently) made my face redder. I assumed this was normal, because in happened to absolutely everyone I knew. (However, if you try to research this topic on the internet, you'll find out that apparently it's NOT common, and only affects Asians and people with Rosacea. Mm hmm.) I'd also like to point out that through all this concern I voiced to my dermatologist, never once did he mention the word "Rosacea" to me, or anything of the sort. I understand this post is lengthy, and off-topic, but I'd like to get this off my chest. In May 2004, I developed a pimple on my nose that left a red mark on it for, what must've been a solid YEAR after it cleared up. I was thorougly convinced this was a scar, and went to several dermatologists to find proper treatment. Such begins my ongoing battle (and subsequent HATRED) for all dermatologists. The first one I saw told me that it was a mole, in spite of it being red, and in the exact spot that a pimple had previously been in. He gave me Benzoyl Peroxide for it, even though I told him I'd been using the crap since I was 12, then took my $100. I sought a second opinion. This one told me it was a scar, and could only be removed by a plasic surgeon. He took my $100, and gave me the number of a plastic surgeon. The plastic surgeon (who was once a dermatologist) was convinced it was a pimple still, and simply lanced it and dug around in it, ultimately making it worse. The fourth and final dermatologist perscribed me Accutane in January of 2005 for my back acne/oily skin. He agreed with ME that whatever was on my nose was inflammed and most likely a sebacous cyst. He injected it with cortisone, and that made a tremendous difference, and today there's not a mark to be found. This is the same dermatologist that dismissed my concerns of facial redness and never spoke a word about Rosacea in spite of my ruddy complexion that I was, at the time, unaware of. I stopped my course of Accutane in May 2005, four months in, due to excessive hairloss. It cured my acne, changed my oily skin to normal and gave me a huge boost in my self-confidence. After a mild sunburn in August 2005 I got at a football game, I noticed the aforementioned spot on my nose showing up. I was at a new branch of my college and went to the local dermatologist to seek treatment. He told me it was probably a scar and gave me the number of a laser surgeon FOUR hours away that "might" be able to help me. THIS is the first time a doctor has mentioned the word "Rosacea" to me. He explained that I had a ruddy complexion, and thus, the red spot on my nose was more noticable. He went on to state that people with my complexion "could be candidates for Roscea later in life." and encouraged me to stay out of the sun. (Something he would have said to anyone, I'm sure.) Then he took my $100. A week later, my sunburn turned into a bit of a tan, and the spot was gone, so I never thought about this again. I had my self-confidence, I was enjoying my Junior Year of college and trying to do well. In April 2006, I purchased a digital camera and became completely vain and obsessed with taking up close flashed pictures of myself. After taking a ton, I began to notice that in some, my face looked kinda red. Around the bridge of my nose, and on my cheeks. Exactly as it appears in the photos I posted on the photo section. Once I noticed this, I immediately began to take pictures after exercising, having sex, drinking.. and began to notice that the areas that were always permanently red were.. kinda redder. This led me to renewed interest in Rosacea, which led me to this forum. I was still convinced I didn't have Rosacea, as my face never felt any differently when it was "flushing" I was not in the age group or sex most commonly afflicted, my skin isn't at all sensitive, and I have no papules or pustules. Some on this forum said I had "mild" or "pre-rosacea" some said I had nothing at all, and some said I "might have it if I flush excessively." So here I am trying to figure out just what the hell a flush is, let alone an "excessive" one, and I'm timing these things, and just being COMPLETELY obsessed about it all. Thinking 24/7 "Is my face red right now? Will it get red?" It totally depressed me, and I now think about it every waking minute of every single day. And I think that's making it a lot worse. Maybe even causing it somehow. That was in April, and I eventually forgot all about it. I went back to living life and never noticed my face being any redder, never felt it getting hot or warm, and simply assumed it was part of my complexion, like it's always been. A lot of normal people I know get redder when they drink, or fool around, or exercise. I just figured, since I'm a little red to begin with, and pale, it just looks a bit redder on me when it happens. No problem, right? Maybe. In July, I got totally obsessed with it again, and consequently, starting noticing it more often. This time, I had a new symptom. Now, I could *feel* my face being hot. It wasn't uncomfortable, but it felt like someone was holding a heater to certain areas of my face. Coincidence? Dunno. I posted here, as I stated. In August, at the advice of much of this forum, I finally decided to see a dermatologist to rule Rosacea in or out so I could get on with my life one way or the other. I went back to the local dermatologist, who had told me that someone with my complexion might be a candidate for Rosacea later in life, and was told absolutely nothing new. He once again told me that, maybe I'd have it one day, and maybe not. I asked him if I should try avoiding "triggers" and he said that I shouldn't bother. Because it probably wouldn't help. I asked if there was any treatment, because I've since learned Rosacea is best treated early on. He said that any creams he could give me would most likely not do anything at all for me, and would be a waste of my money. The entire visit was quite ambiguous. I asked him what "Pre-rosacea" was, and what the difference was between that, and a normal ruddy complexion. He told me that, in his opinion, there wasn't one. As he considers anyone with a ruddy complexion at risk for developing Rosacea, and THAT he considers to be "pre-Rosacea." Before I left, I asked him for a definitive answer one way or the other, and he told me NO, I do not have Rosacea. But I've obviously got something. In my research further, I've discovered it could be anything. The forums over at ESFB describe Rosacea, Flushing, and Blushing all as different things. I've learned that certain foods can cause a flush, or too much Niacin in the diet. Allergic reactions, types of lupus.. but the internet seems convinced that any redness in the face that does not go away is absolutely ALWAYS Rosacea, or will be. Which sounds way too alarmist for me to believe it. After my visit with the doctor, I was thorougly relieved. I experienced no "facial warmth" after that that I could notice, and chalked the permanent redness in my face up to a part of my complexion that has always been there, and thus, is not some chronic condition that is bound to get worse. Two months without noticing a problem, and I'm here posting again because the side of my face feels like someone has a heater next to it, and it's beet red, and I'm convinced I have something wrong. The problem is, it's not following any kind of pattern. Where I previously only noticed redness when I was exercising, or drinking.. now I notice it getting redder when I'm just sitting there doing absolutely nothing. For awhile, I would wake up and my face would look perfect. It would feel cool to the touch, and not present a problem for me. Then I would get home in the evenings, and just be sitting there watching TV when I would suddenly feel one side of my face (never both, and almost always the left) getting warm. I'd look in the mirror and notice it was pretty red in the area that was warm, much redder than usual. And that the ear on that side of my head was also sometimes beet red. Sometimes it will only happen to my ear, and not that side of my face. Sometimes, it happens to that side of my face and that ear. Sometimes it happens to both ears, and not my face. It NEVER happens on the right side of my face, though it does sometimes happen to my right ear. This can happen when I'm hot, cold, anxious, calm or relaxed. There's really no pattern or "trigger" I can pinpoint, which makes me wonder if it's even Rosacea at all, since it seems to be completely asymmetrical, and not brought on by anything I'm aware of. As I'm writing this, I'm in a cold room with a blanket on to keep from shivering. My ears are cool to the touch, and my right cheek is freezing cold. My left cheek however is so hot and red it feels like I have a fever. The bridge of my nose is also a bit redder than usual, but feels cool to the touch. My entire neck isn't red, but feels exceptionally hot. Thus far, the only "cure" I've found for this is to keep a fan blowing constantly on the side of my face to cool it off, and that seems to work. But I can't control this. Some mornings I'll wake up and go to class and feel perfectly self-confident because my face isn't doing this. Other mornings I'll wake up and within 20 minutes of being awake, I'll feel one side of my face start to get hotter, and it'll stay that way all day, only feeling better when I'm outside, or putting a fan right on it. I don't know what this is. Rosacea seems more symmetrical, more prone to papules and pustules, more sensitive skin, and not common in my age group. According to ESFB, it could be facial flushing or blushing, which again according to ESFB are not Rosacea, but may lead to it.. while according to the internet it's obviously Rosacea (because any flushing or blushing of any kind must be..) I also wonder if this is completely psychosomatic. When the doctor told me I didn't have Rosacea, I didn't notice this "warmth" of the face. When I went to the beach at the end of August for two weeks, I didn't notice it once. But once I got back to school and started thinking about it again, obsessing about the constant state of my face, I begin to notice it more and more. And if this is the case, I don't see how it could possibly be cured. I do find that taking my mind off of it seems to help somewhat. To the point of the original thread, I'd like to determine what it is I have. The doctor seems sure it's not Rosacea, but as evidenced by my ongoing battle with Dermatologists prior, I believe if I went to 10 Dermatologists I would receive 10 different opinions. Rosacea, ruddy complexion, acne, allergic rash, facial blushing, too much Niacin, high blood pressure, lupus... these people don't know anything, and with no insurance I'm not going to waste $100 a visit to find out precisely nothing. What I am going to do is try this "Melanotan" I keep seeing posts for on this forum. I've been looking at the forum over at melanotan.org, and I'm hopeful that maybe if I can give myself a nice tan I can mask whatever redness is in my complexion. Even if I can't, it certainly appears a lot better on tan skin than it does on my lily-white ass. 
But I am certainly getting sick of all this nonsense, and I'm sure sick of obsessing about it. I'm a college student at Penn State University. There are 50,000 kids here, and I see a good deal that have ruddy cheeks all the time. These people have probably never even heard of "Rosacea" and never will. But according to modern dermatology, anyone with permanent redness of any kind on the face has damage from Rosacea. Which makes no sense to me, because everything I've read about it says that "A propensity to blush or flush excessively can lead to Rosacea" and THAT can lead to permanent redness of the face and broken blood vessels. What about babies with ruddy cheeks all the time? Children with the same? Or young adults like myself who've always had some permanent redness to the face? Have we been born with Rosacea? Or is it possible that some people just have that complexion type? If it's possible that some people have that complexion type, how come no one acknowledges it? Or says that it's always a sign of Rosacea? Why do some people say a ruddy complexion is only Rosacea if it is also accompanied by flushing or blushing? EVERYONE blushes when they're embarrassed. EVERYONE I know flushes a bit when they're drunk, or sweating profusely. If you take into consideration that any blushing, etc. stands out TENFOLD on someone who is already quite pale, or someone who has a "ruddy complexion" does this in turn mean that person has Rosacea? If you stand someone with pale skin and a ruddy complexion next to someone with a dark skin tone and embarrass the hell out of both of them as such that they both "flush" to the same degree, which one do you think will look much worse? Obviously the fair-skinned individual. But does that mean this person must have Rosacea? I'm going to go ahead and order this untested Melanotan II. I'm going to test a non-approved FDA drug and go against everything modern dermatology has told me and tan until my body can't take it any more. Because I'm pretty sick of dermatology, and the way that I look. If it makes my skin look worse, so be it. At least it will mask the redness in my face a bit. If I wrinkle and look like a catcher's mit when I'm 30, fine by me. As long as I get to live my life the way I want. I'm tired of having to pretend I'm not in the mood when my girlfriend wants to have sex in the middle of the day. I have to abstain because my face might flush (sometimes it does, sometimes it doesn't) and then I'll feel like shit about myself for the rest of the day. I'm tired of telling my roommates I can't drink in the afternoon or early evening for the same reason. I'm tired of having this beer gut and being absolutely terrified of trying to exercise it off due to any increased flushing I might give myself, because flushing ALWAYS leads to Rosacea, and triggers should be avoided. That's the only "cure" right? Sigh. If it's even Rosacea. I can't get a straight answer either way. Not from the internet. Not from here. Not from doctors. Before I conclude this truly EPIC post, I want to add one more twig to the fire fueling my hatred for dermatology. On the www.acne.org forums when I began to post over a year ago about the redness in my face, MANY of them agreed it was a side-effect of the Accutane. When I started posting here, I went back there and saw a few people complaining of facial redness that looks exactly like mine does. Many people agreed and even said "Everyone that took Accutane gets that same facial redness in that same pattern." but the word "rosacea" is never mentioned. If you ask a dermatologist and say that your face got red when you took Accutane, he'll just tell you it's coincidence. That the increased photosensitivity while on the drug is just making you burn mildly, or that you were developing Rosacea coincidentally while on the drug. Better yet, when my hair started thinning out rapidly and diffusely in NO "pattern" three months into Accutane, I was told it was COINCIDENCE! That I was probably going to go bald anyway, that it must be male PATTERN baldness (in spite of exhibiting NO pattern.) These medical professionals told me with a straight face, that even though temporary and occasionally permanent hair thinning can occur with prolonged use of a retinoid (a vitamin A substance like Accutane) that most people complaining about hair loss while on the drug are just coincidentally losing hair, and would have lost it without Accutane. I think that's a steaming load of crap. My hair's grown back quite a bit, but it will never be as thick as it was prior to using Accutane. Furthermore, I'm convinced Accutane played a role in whatever condition I have right now. For starters, it totally altered my sebacous glands permanently. My once oily skin is now not the slightest bit oily. Accutane also thins the epidermis. I'm no doctor, but it logically makes sense to me that if your blood vessels are working overtime in your face, you'll certainly SEE that more through a thin epidermis than you would through a normal one. Maybe that's why I never noticed it before Accutane. Who knows. And yet, if you type "Accutane and Rosacea" into Google, or peruse these forums you'll find that some people actually use the drug to TREAT Rosacea. How ironic. EDIT - Forgot to mention that, like I said this always seems to be one side of my face. And occasionally, the same eye on that side of the face gets bloodshot or irritated. Thanks for letting me get that all out, and kudos to anyone that read it all. If anyone wants to discuss a specific point of my giant rambling, feel free. And yes, I've read the threads on Melanotan, I'll be sure to post pictures and let everyone know how, if at all it works for me. |
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Forum Moderator
Joined: 30 Jul 2006
Location: Melbourne, Australia
| Posted: Mon Oct 16, 2006 10:27 pm Post subject: | |
| Hi
Phew that was a long post! I can so relate to your story though. I went through a similar thing. I have realtively bad flushing, i flush everyday mildly at at least once a week get a burning hot flush that is bright bright red. Have you tried applying cool to a flush? That works for me. I wet a washcloth with refrigerated water and apply it to my flush for a minute or so, longer for a bad flush and it nearly always gets rid of it and the hot burning feeling. I nearly always carry wet washcloths in plastic bags and cool packs where ever i go because that way if i flush badly at work or while out i can get rid of it. I tried icepacks but think anything too cold actually irritates my face. I went through the same thing, any google search with facial flushing comes up with rosacea. I still don't know if i'm pre-rosacea or not. Or if there is such a thing as pre-rosacea. After freaking myself right out and getting obssessed about trying to stop flushing i think i develeoped anxiety about it that was far worse that rosacea ever could be. I was like you too and took pictures on my digital camera non stop. When i finially told my doctor that i had been thinking that every flush was progressing my condition and that if i didn't stop it it would just keep getting worse he was really shocked and said there was no possible way to stop all flushing and to try was to cause a great deal of stress. Which i why i ended up of avanza, i realised that my anxiety was out of control and it has made a huge difference. I'm flushing just as much but it no longer freaks me out or stops me living my life. He told me then that flushing, or a ruddy complexion, is not always rosacea. That he has many many patients that flush or blush everyday without it ever developing into rosacea. The first dermatoligist i saw also said that my problem was hypersensative blood vessels combined with fair see through skin. I asked why it now hurt and felt so hot when this didn't happen before he had said that because the intensity of the flush had got worse it now would feel hot and burning. And i do notice now that i can't feel my mild flushes. The second derm said the same, that i didn't have Rosacea but a common flushing problem and that if i didn't get it under control it could turn into Rosacea. He at least spent a great deal of time explaining everything that could cause flushing and checked that i used suncreen, gentle cleanser and moisturiser, talked about beta blockers and diet. Triggers for rosacea are also triggers for people with hypersensative blood vessels so it's still worth following the advice with Rosacea. But if cutting them out doesn't help then theres no need. If triggers don't make you redder that your problem could just be a naturally ruddy complexison although your recent flushing on one side could be hypersensative blood vessels. When my flushing first started it was one sided too. Also check all meds, Surely accutune could cause redness. My flushing first started as a side effect of zoloft and then went really bad when i started a tryclylic antidepreessant for nerve pain. My reaction to both was quite unusual but my doctor said that potentailly any medication could result in flushing or redness in sensative individuals. Also my reaction to Tryclylic antidepressants caused extreme all over body flushing. It's now 4 weeks since i stopped it and although it is much ,much better by doctor said it would be another 2-6 weeks until my blood vessels stop being so overreative. Apparently blood vessels have memories and will rememeber to dilate easily for a couple months after the drug is out of the system. Maybe this is the case after accutune? Are you on any other meds? Actually the second derm had told me that since my flushing got bad from meds that it might actually calm down by itself within a couple of years. So this might also be the case for you? That would be nice.  _________________ ______________ 29, Flushing. Tried: Propranolol, Clonidine, Dorxy, Finacea, IPL, Betablockers, NSAIDs. Now: Avanza, V-beam, H1, H2, Rosex |
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Joined: 17 Jul 2006
| Posted: Mon Oct 16, 2006 10:41 pm Post subject: | |
| No, I'm not on any medications right now. And I took my last Accutane pill in May 2005. So it's been over a year.
EDIT - And my face *does* get redder when it's flushed, but it only ever flushes on the one side. The problem is, I can't avoid triggers because the only triggers are things I can't possibly avoid doing. Exercising, having sex, or drinking. And I'd wager 90% of my flushing occures when I'm just sitting there doing absolutely nothing. Nothing at all. It's happened while I've been reading a book.. Since I posted that original post, I've had a fan on the left side of my face, which has calmed it down. But even with that, while I've been sitting here casually surfing the net, my left ear is now flushed really bad. I'm hoping that tanning, as much as it's cautioned against will make my life more managable. Even if it only masks my problem a bit. |
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Joined: 11 Jun 2005
Location: British Columbia, Canada
| Posted: Tue Oct 17, 2006 2:38 am Post subject: | |
| My roscea came out very suddenly and rapidly - not flushing to severe flushing in a matter of about 3 weeks and I asked after of people whether I was flushing before and not realizing it and everyone said no (I always know when I'm flushing - heat and some pain - less after laser treatment and meds). One problem I did not have was getting a diagnosis - GP nailed it right on the head first time).
FYI - Personally, I know in the past I would flush spontaneously - for no particular (apparent) reason - I do less so after having laser treatments. Some things to keep in mind are that some on this and Yahoo RS group have mentioned that reactions to some things can come hours, or even days after the trigger - a daily diary of what you do and eat for a few weeks might help you discern a pattern (if there is one). Anther FYI - I can often flush on just one side or the other - really annoying and overall I would say the right side of my face is more problem than the left. I've seen others posting saying they get the same. I do think anxiety and stress can play a definite role in flushing (a lot depends on the individual) - I'm pretty sure looking back that part of the problem when my flushing came on was my doctor (who gave me nothing for it - not even one of the metros  ) kept telling my I was mild and to just get used to the burning (and pain). With the rapidity of the onset - I went into a real tailspin mentally and I do think that made it worse (ain't hindsight great) - all I could think was "if this is mild - what will it be like if it gets worse?" - thank God for the Internet as it made all the difference in the world as suddenly it became apparent (despite what my doctor said) that there were treatments that could at least help (and in all fairness to my doctor - if I go to him with decent reasoning to try a medication he has always been willing to let me try - but it is me going to him, not him coming up with the ideas).
The age thing seems to be a real "myth" out there - while I fall into the age group most likely to be affected with Rosacea - there are FAR too many younger people on this group that fall outside of the "typical age range" (usually 30 and up) to make that range anything but a myth (IMHO). Have you thought of sending some of your pictures and/or questions to some of the doctors (mostly IPL and Laser) that are mentioned on this group to see if they think you have rosacea (these are doctors that are used to dealing with it on a regular basis and usually see it in all it's forms)? Some pictures and the description of your symptoms might give them enough to give you a diagnosis or at least their opinion. You would have to ask them if they would be willing to do so, but many are very helpful to rosacea sufferes (I'm thinking of Dr Crouch, Dr Patterson, Dr Darm and I know there are others mentioned often)? I've been fortuante to be able to get my symptoms (mostly painful flushing) under much better control mostly via laser treatments, but I still deal with it pretty much daily (don't always flush, but have to be aware). Best of luck to you as you try to get this figured out! _________________ Diane Vancouver Island, BC |
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Joined: 17 Jul 2006
| Posted: Tue Oct 17, 2006 3:21 am Post subject: | |
| This is another reason I doubt Rosacea. I have never had painful, or even mildly discomforting flushing. It simply feels warm to the touch, and there's a slight warm sensation on the area. Exactly like it feels to have a fever.
And no one else finds it extremely suspect that when a doctor confirms I don't have Rosacea, or when I'm on vacation and occupied 24/7 I don't flush a single time? But when I start thinking I have Rosacea again, I start flushing? |
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Joined: 28 Sep 2006
| Posted: Tue Oct 17, 2006 1:34 pm Post subject: | |
| Stb 09,
I was diagnosed with seborrheic dermatitis on my face about 5 years ago. The diagnosis was made by a dermatologist. Soon after, the dermatitis completely disappeared for a loooong time. Then, I suddenly got a red patch on my right cheek five years later, more precisely in February of 2006. It has slowly spread to my entire right cheek. It got worse in the summer. This whole time I thought I had seb. dermatitis. My family dr. said my face was dermatitic and prescribed hydrocortisone. It didn’t help. In August of 2006 I went to my dermatologist. This time, he said I had rosacea. I was shocked. I was not flushing like crazy (except maybe when I played soccer in +35 C degrees outside). My symptoms started as a small red patch on my right cheek, this could not be rosacea. I went to see another dermatologist (an old dude who thinks rosacea is a proper diagnosis only when your face is swollen like a balloon and when you are covered with pustules). So, now I have two doctors thinking I don’t have rosacea, and one doctor thinking I do. The disease has meanwhile progressed. Now it includes: 1) Noticeable redness and ruddy complexion on the right cheek only (left cheek is still fine) 2) Swelling of the nasolabial folds and enlarged pores in those areas 3) Often red nose with some enlarged pores and a papule or two (some pus-filled) on the nose almost every day – they quickly come and go. 4) Occasionally red ears (with some visible blood vessels on both) 5) Meibomian gland dysfunction (posterior blepharitis), symptoms of which I mostly feel in my right eye. Left eye is still relatively OK. Like you, I desperately need to get a proper diagnosis. I don’t know whether I have rosacea, seborrheic dermatitis, or some weird mixture of both. Like with you, most of my symptoms are located on the right side of my face. The left one is still relatively fine, with the exception of the nasolabial fold. Like you, I take 100s of pictures of myself almost every day. One moment I think that there is no doubt – I must have rosacea. The next moment I think – this is not rosacea, it can’t only be on one side of my face, I do not flush insanely, blah, blah, blah….This has been driving me crazy since February of this year. I don’t have a peace of mind. I need answers… I do think, however, that both of us stress waaaayy too much…This stress is only making us more “sick”, regardless of whether we have a vascular/skin disease or not. It needs to be eliminated as soon as possible. Of course, that’s easier said than done… |
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Joined: 17 Jul 2006
| Posted: Tue Oct 17, 2006 4:21 pm Post subject: | |
| It's a shame that no two doctors can agree on something. What if this was a life-threatening illness that required a proper diagnosis in order to be treated? I don't understand how these people can make six-figure salaries when they're not actually doing anything.
"Doctor, is it cancer?" "Well, it could be. Maybe it's something else. See, what you have I don't personally like to call "cancer." But some other doctor might say that it is cancer, that's just not my opinion." "Uh huh. So is it?" "I don't know. No. You might have it later?" "So how can I treat it?" "You can't, because you don't have it." Sigh. My dermatologist was a middle-aged guy, and was the first one to actually say the word "Rosacea" to me when he said that someone with my complexion might eventually develop it. I assumed he'd be the one to go to for a proper diagnosis. But if you really search on the internet, you can find a few bits from other dermatologists who have written about how Rosacea is often overdiagnosed because there's all this information floating around that absolutely ANY ruddiness to the complexion is, in fact, Rosacea. I simply don't think this is true. Go to Ireland, or Australia. Do 75% of people there suffer from Rosacea? Or is it possible that people of certain heritage simply DO have ruddy complexions? If normal human beings blush to certain stimuli, am I not right that this is FAR more apparent on the fair skinned than it is on the dark skinned? And what happens when someone with a normal, healthy ruddy complexion blushes? Could this not resemble Rosacea? Which is probably why some doctors won't diagnose it unless there are papules, pustules, swelling, discomfort, etc. Because if the skin's perfectly healthy, not at all sensitive, has ALWAYS been a little ruddy, and you're fair to begin with, there might not be a problem. Of course, you could also find an equal number of doctors ready to tell you that you've got a problem. EDIT - Did you also notice that no two pieces of information can agree on the progressive nature of the disorder? Some information will tell you that Rosacea is always a progressive and cumulative disease. But some (and most doctors) will tell you that this simply isn't true. It MAY get worse, but it MAY not. |
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Joined: 12 Jun 2005
Location: UK
| Posted: Tue Oct 17, 2006 5:58 pm Post subject: | |||
| Hi stb09,
I've had a look at the pictures in the photos section and i have to say IMO you look fine. In one of your posts you said the following:
Now i'm not gonna tell you 'it's all in you mind', i know how infuriating that can be. Only you know how bad the physical symptoms are. But one thinks for sure all this obsessing is not doing you any good. WHen my rosacea was in it's earlier stages i used to get up every morning and scan my face for new broken blood vessels and continue doing it many times during the day. It was all very depressing... It does not do you any good if anything it makes it worse. To use an example i was a very serious golfer when i was younger and read a lot about the psychology of it. How when you are about to hit a shot to think 'don't hit this in the water' is a recipe for disaster. Why - because your brain doesn't recognise the negative. It becomes a self-fulfilling prophecy. And i think a similar thing happens when you think about you face being red or hot. If i was going to give you advice it would be to contiue to try to get to the bottom of your condition. See the specialists. Perhaps try to live a pro-rosacea life style, eg: try to stay out the sun, eat healthy, limit you drinking, perhaps take some supplements etc Keep all your efforts pro-active. Then just enjoy life and stay away from that damn mirror. |
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Joined: 28 Sep 2006
| Posted: Tue Oct 17, 2006 8:18 pm Post subject: | |
| Stb09,
I think all this talk about "everyone who flushes has/will have rosacea" is pure nonsense. I've seen tons of people who flush and who never developped or might never develop rosacea. I think that rosacea is genetically pre-programmed in certain individuals and will appear in only those individuals under right conditions (amount of sun exposure, environment, food, climate, stress, etc.). My family doctor, too, said that rosacea is not necessarily progressive (But, what does he know about rosacea, anyway???). Internet sites seem to say that it is a generally progressive disease. But, think about it, how many people with rhinophyma have you seen? How many people with the most severe rosacea as seen on the Internet pictures have you seen? If it were all like many Internet sites claim, you would see people with W.C. Field/Karl Malden noses all the time all around you, right? Either most people are great at treating their rosacea, or rosacea does not necessarily advance to the most severe stage. (as seen on the Net)..I think the progression also depends on your skin type... I understand your frustration with doctors. I am in the same boat. I want a doctor who cares. A doctor who will diagnose me. A doctor who will treat me. Not a git who will dismiss me as if I were an insane hypocondriac. Unfortunately, I am surrounded by indifferent "professionals" who seem to know less about rosacea than I do. I think that the key to recognize rosacea (or a skin disease in general) is to notice a significatnt difference from how your skin was before. In my case, red patch that slowly progresses to more persistent redness, red-ish nose with small papules, enlarged pores and swelling of nasolabial folds, red ears, and posterior blepharitis on my eyes tell me that something is very wrong with me. Even though 2 out of 3 doctors are saying that I don't have rosacea, they are not providing alternative suggestions and/or solutions. I know very, very well that something is very wrong with my skin. I want to know what it is and how to approach it/treat it, and so far I have not found real help. |
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Known socket puppet account
Joined: 29 Sep 2006
| Posted: Tue Oct 17, 2006 8:22 pm Post subject: | |||||
I have to agree with Spav - you look great. I think we're always are toughest critic though. _________________ "You are talking to kid DY-NO-MITE!" -J.J. Walker from Good Times |
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Joined: 17 Jul 2006
| Posted: Wed Oct 18, 2006 4:03 am Post subject: | |
| It's tough to tell if it's getting worse. As I said in my photo post, and in this post.. I never seemed to notice it until this year when I started taking a lot of pictures.
But a year ago my girlfriend told me that "my face was always a little red." Last year, this dermatologist told me that my compelxion was ruddy. Back in high school, I used to complain about being pale and a friend told me "it was bad because I had some color in my face." I look at some old pictures of me and can't see it at all, but in others, some of the ruddiness is there. This "hot" feeling and such is definitely new though. But I wonder how much of it I'm bringing on myself. I started noticing it back in July when I had become completely convinced that I had Rosacea, and it stopped when I was completely convinced I didn't. Now that I'm uncertain, it starts up again. Seems strange that if I these "hot" flushes are indeed a symptom of Rosacea that I'd develop them over the last three months.. EDIT - And I'm not going to live like I have Rosacea. I'm going to go ahead and take this Melanotan stuff and start going to the tanning salons for a bit. If that sparks Rosacea in me, because I'm "predisposed" to it, so be it. But it could just as easily spark if I keep drinking, having sex, exercising and doing other things I can't avoid that cause me to flush. At least a nice tan will mask it a bit, and maybe the self-confidence boost will decrease my anxiety a bit, and maybe even decrease the flushing as a result. |
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Forum Moderator
Joined: 07 Jan 2006
Location: Australia
| Posted: Wed Oct 18, 2006 12:16 pm Post subject: | |
| Hi stb09
Stress is definitely my biggest trigger. I have read many posts where people have written about being on holidays and their face has been great. Stress-free environment. When back to the normal routine, it arks up again. Perhaps you could consider some relaxation techniques. Jen |
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Forum Moderator
Joined: 30 Jul 2006
Location: Melbourne, Australia
| Posted: Wed Oct 18, 2006 10:59 pm Post subject: | |
| Please have a good think about Melonatan, i know how nice it would be for whatever is happening to skin your skin to not be visable but the last thing you also want is to have to deal with any weird side effects.
Have you tried all the rosacea and seb derm treatments yet? I couldn't see any listed in your post? There are lots to try and there is a chance that using one might actually fix or control the problem, rather than just covering it up. Stress was a trigger for me too. When i looked in the mirror and saw that i looked normal i would feel so relieved, but then would feel really anxious about if i was going to flush. Which would then make me flush!  If you didn't have any issues on holidays than it sounds like stress is a big trigger for you.
For me going on an antidepressant really helped. I became so anxious about my skin and flushing that it quickly took over my life. Once the medication started working i felt so much happier again and even though i still flush a lot it doesn't bother me half as much as it use to. For me personally, anxiety about flushing, or about my skin getting worse and worse became a much bigger problem that the actual rosacea. _________________ ______________ 29, Flushing. Tried: Propranolol, Clonidine, Dorxy, Finacea, IPL, Betablockers, NSAIDs. Now: Avanza, V-beam, H1, H2, Rosex |
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Joined: 17 Jul 2006
| Posted: Thu Oct 19, 2006 1:47 am Post subject: | |
| What treatments can I use? I need to know what the problem is before I know what the treatment is. As I said, I shelled out the cash and had a dermatologist look at me. Said I didn't have Rosacea.
All the creams the dermatologist had were for skin that's already damaged by prolonged flushing. My skin's fine, the problem is flushing. That's an internal thing. Dermatologist even said nothing he could give me would work. I'm not depressed, and I'm not stressed. So unless there's a way to stop flushing from being hot, or cold, or physically active.. then there's really no treatment I can think of. Antibiotics only work to reduce inflammation, or papules/pustules. I don't have any of that. I also don't have anything resembling seb-derm. EDIT - http://en.wikipedia.org/wiki/Rosacea "Some acne and wrinkle treatments that have been reported to cause rosacea include microdermabrasion, chemical peels, high dosages of isotretinoin, benzoyl peroxide and tretinoin." Isotretinoin = Accutane. But they still use low doses to *treat* Rosacea. And deny that it could ever in a million years cause it. |
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Forum Moderator
Joined: 30 Jul 2006
Location: Melbourne, Australia
| Posted: Thu Oct 19, 2006 7:02 am Post subject: | |||
Flushing is hard to treat. Dermatologists are not experts in this area as like you said it's not your skin that is the issue.
My skin is fine too and the first derm I saw said the same thing and refered me to a derm who specialises in laser. The laser derm knew much much more about flushing and made sure i had tried everything, including betablockers, low dose aspirin, antihistamines (H1 and H2) and clondine and certain antidepressants, before he would try laser. He also made sure that i worse sunscreen everyday, used gentle skin care, had made dietry changes etc. So some of these might be worth a try. _________________ ______________ 29, Flushing. Tried: Propranolol, Clonidine, Dorxy, Finacea, IPL, Betablockers, NSAIDs. Now: Avanza, V-beam, H1, H2, Rosex |
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