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How to piss off a dermatologist in just 7 words...

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  • How to piss off a dermatologist in just 7 words...

    Its a beautiful day. Something felt just a tiny bit magical. Today, after 2 months of self diagnosis and my docs rather half hearted diagnosis, i was heading to a dermatologist. Finally some answers. Well, just got back from the dermatologist...

    My face isn't that bad today, luckily I had taken some pictures of my flares to show him. The conversation went something like this...

    Dermatologist: 'I see...does it get scaly?'
    Me: 'No. Oh and i also have MGD and blephitits which is how all this started. I was outside on the swing seat in summer and came in and I had a red patch on my cheek. I thought it was sunburn, but it never went away and only got worse' I said.*
    Dermatologist: 'Does it itch?'*
    Me: 'No, but it does burn a lot and*I also blush a lot more then I used to and that's when it flares'*
    Dermatologist: 'Hmm' he says... 'I think it's Seborrheic Dermatitits, but it could be rosacea, but I doubt it and you seriously wouldn't want that'
    Me: 'Right, what about the flushing and flaring? I didn't think that was a symptom of Seborrheic Dermatitis, nor the burning' I said
    Dermatologist: He shrugs 'do you flush to alcohol?'
    Me: 'No, luckily I don't. But I do flush to embarrassment, excercise, cold weather, hot baths, spicy foods, stress and my skin has become very sensitive to face wash. I never used to flush to these things like this'
    Dermatologist: 'I'm going to prescribe you a steroid cream, apply it...'
    Me: 'I don't want to use steroid cream'
    Demontologist: 'And why is that?'
    Me: 'Because it may work in the short term, but if it is rosacea, then it could make it worse' I said
    Demontologist: 'You shouldn't believe eveything you read. But if it does get worse, we'll cross that bridge when we come to it'
    Me: 'I really don't want to risk it' i said, worried now 'maybe another treatment is available?'
    Demontologist: 'This is hydrocortisone. It's the most mild of all steroids. I'm not giving you a strong one. It won't thin your skin. Apply it when your skin flares'
    Me: 'With all due respect' thinking not much was due at this point 'it might also be*Keratosis pilaris rubra atrophicans faciei' I said pronouncing it completely wrong 'I hadn't even thought of it unit I saw someone on a forum had been mis-diagnosed with rosacea and was that. Apparently a white patch in the middle is typical of how it manifests on the face. That's what I have in the middle of mine. Plus, also flushing and blushing. That and rosacea seem quite similar'
    Demontologist: 'It's not that. That is a horrible condition and you don't want that. Try the hydrocortisone cream and in two days it'll be gone'
    Me: 'With respect, I won't use it even if you prescribe it to me'
    Demontologist: 'Well what's the point of coming to see a dermatologist then?'
    Me: 'So I can get am accurate diagnosis'
    Demontologist: 'No one can give you an accurate diagnosis'*
    Me: 'Well, there has been some research and apparently you can test for*Glycomics Analyses of Tear Fluid in the tear film'
    Dermatologist: 'Well' (laughing) 'I'm not an *Optometrist, so I cannot help'
    Me: 'I just thought as the skin and eye conditions are so closely related, you might be able to test rather then giving me something that might make it better or worse as you cannot give an accurate diagnosis'
    Demontologist: Try the steroid cream or if you prefer I don't have to prescribe you anything'

    Raised eyebrows followed and a sustained period of uncomfortable silence while he wrote out the paperwork...

    So I am no further forward...I still don't really know what it is I'm dealing with... Rosacea, SD, KP. All? Some? One? Something else entirely?*

    Is it a good idea to try the steroid cream? Maybe he is right?

    Maybe I should posts some pics on here and get some opinions.

  • #2
    I think most of us have been in your shoes, very very frustrating - that's why it's so important to find a great Doc/Derm who treats rosacea consistently/daily. - Please do post some pics, we have a lot of very intelligent rosacea veterens on here, but still find a Derm that knows what they're doing.

    Comment


    • #3
      100 anecdotal reports of misdiagnosis or rosacea (or vice versa)

      Your report is now #100 of a collection I have been accumulating for some time now and can be read by clicking here. Your diagnosis was more amusing than any of the others. I would hope you could afford to get a second opinion and let us know the results. You should join the RRDi and write an article for our journal or at least ask the MAC some questions.

      Comment


      • #4
        Originally posted by DukeCity View Post
        very very frustrating
        You've hit the nail on the head!

        I will post some pics I think. But might just cover up my face a bit as feel a bit self conscious of being recognised.

        Comment


        • #5
          Sorry to hear about your experience but unfortunately this can happen and it's not amusing when it happens to you. I had something similar happen to me with a female NHS dermatologist and it was obvious she was clueless about rosacea so I quickly moved on. Ditch this dermatologist and try and find one who has a proven track record of treating rosacea or who can at least tell you exactly which condition you have.

          If you live in the UK then I would recommend you try and see Dr Tony Chu at Hammersmith hospital in London but you will need a referral from your GP. Remember as with anything there are good and bad dermatologists out there but there are plenty of good ones around although you have to be prepared to do your homework to find them.

          Good luck

          Peter

          Comment


          • #6
            Originally posted by Peter View Post
            Sorry to hear about your experience but unfortunately this can happen and it's not amusing when it happens to you. I had something similar happen to me with a female NHS dermatologist and it was obvious she was clueless about rosacea so I quickly moved on. Ditch this dermatologist and try and find one who has a proven track record of treating rosacea or who can at least tell you exactly which condition you have.

            If you live in the UK then I would recommend you try and see Dr Tony Chu at Hammersmith hospital in London but you will need a referral from your GP. Remember as with anything there are good and bad dermatologists out there but there are plenty of good ones around although you have to be prepared to do your homework to find them.

            Good luck

            Peter
            Thanks Peter,

            I doubt my GP will make another referral unless it gets worse! But thanks all the same. I think I will explore some other options.

            Since I adjusted my 'dose' of RLT to 10mW/cm2 for 10 mins giving 6J/cm2, my skin has been calmer. Here hopes it's cumulative!

            Comment


            • #7
              I was once in a similar situation to you because the NHS dermatologist I saw also told me that I had seborrheic dermatitis, even though it would have been obvious to a proficient dermatologist that I had rosacea. Anyway after seeing her twice I went back to my GP and insisted that he referred me to Dr Chu as a private patient. I wasn't rude but just assertive because at the end of the day it was my face, my skin and I wanted the best advice and the best treatment options for it. My advice to you would be for you to do the same and if your GP isn't going to help you obtain a second opinion then change GP's - it's your right to do so.

              As I told you by PM I think you have been overdoing it with your lamp. Some of these lamps are more powerful than others and not everybody can tolerate the ones that also emit IR. As with all treatments for rosacea there are never any guarantees that everybody will respond the same way with RLT so you may well have to experiment initially to work out what your best regime is e.g. every other day might be more suitable if your skin is more sensitive in the early stages. If you search for "Judworth's" story on here you will find that she had some problems to start off with RLT but eventually found that by reducing the time and frequency she started to see results.

              Well I found the effects of RLT were cumulative but it does take a lot of patience and it could take a couple of years before you reap the maximum benefit if indeed you are suited to it.

              Peter

              Comment


              • #8
                Hi Peter,

                Yes I have slowed down now. Instead of nearly 65 J/cm2, I have reduced it to 6 J/cm2 (10 mins at a distance of 4-6cm with a 70mW/cm2 unit means it relative to a 10mW/cm2 unit) and I am starting to see results. All be it subtle.

                I am willing to see a cumulative effect over 2 years if I know it is improving

                How long did it take before you saw results? What were you milestones?

                Thanks
                findingaway
                Senior Member
                Last edited by findingaway; 29 January 2011, 02:19 PM.

                Comment


                • #9
                  Sorry to hear about your experience. You wrote it in a very amusing way.

                  Whilst we cant offer you an official diagnosis, it may be helpful to post up a photo. As you say you can edit it to remove any features that you feel might make you recognisable.

                  Comment


                  • #10
                    Originally posted by phlika29 View Post
                    Sorry to hear about your experience. You wrote it in a very amusing way.

                    Whilst we cant offer you an official diagnosis, it may be helpful to post up a photo. As you say you can edit it to remove any features that you feel might make you recognisable.
                    You can either laugh or cry. I tend to laugh most of the time

                    Ok. Will post some pics up when I get a sec to edit my features out.

                    Comment


                    • #11
                      seb derm v rosacea

                      original derm who i had been seeing for years said in 2009 that i had rosacea on top of seb derm, in 2009 just had one to two spider veins on nose and hardly noticeable bit of pink huse on small part of cheecks. Now i have countless spdier veins on nose and blush/flush very easily to any typical rosacea triggers.

                      Was on protopic for years up to seeing a new derm in sept of last year who siad i had seb derm only and this was confirmed by another derm in oct of last year. the derm i saw last oct in a leading rosacea specialist in ireland and has wrote a well regarded book on rosacea.

                      Anyway still not convinced that i only have seb derm, the derm i saw in oct i asked him about the protopic and he said people can have reactions to it. He also said that he can only diagonose what he sees on the day.

                      the skin in not as bad as it was in sept of last year but is no way under control. Think the only solution is to try different products and if they dont work rule them out. ie it antifungal doesnt help seb derm is it then rosacea or do you need something else for the seb derm. Also if you can find a derm who is willing to explore different options/drugs all the better, something i have not found in ireland.


                      M

                      Comment


                      • #12
                        Originally posted by findingaway View Post
                        Hi Peter,

                        Yes I have slowed down now. Instead of nearly 65 J/cm2, I have reduced it to 6 J/cm2 (10 mins at a distance of 4-6cm with a 70mW/cm2 unit means it relative to a 10mW/cm2 unit) and I am starting to see results. All be it subtle.

                        I am willing to see a cumulative effect over 2 years if I know it is improving

                        How long did it take before you saw results? What were you milestones?

                        Thanks
                        Hi

                        Glad you've slowed down - there is plenty of time and no rush plus more is not always necessarily better. If you are seeing results and feel comfortable then carry on as you are doing but don't get too close at the moment and don't worry if you miss the odd day as it will not matter.

                        If I was you I wouldn't get too involved in the science of it all at this stage and just keep positive that something appears to be helping. Try and chill out when using the lamp and stop worrying about your skin and rosacea. Any changes will be very subtle and as time goes on they will become more evident but remember RLT isn't a cure. Get someone to monitor your progress and either take a picture of your skin every couple of months or just make a mental note yourself of how your skin looks and feels.

                        I got results after just a couple of weeks but I only realised becauseTony Chu was taken aback when he saw me and he said much of the redness was going. There were ups and downs on the way but as well as the redness disappearing my skin also became very much softer which was a sign the inflammation was being reduced. If it's going to work then I would expect noticeable positive results by 3 - 6 months and after a year a big improvement which could plateau out after two years. Again there are no hard and fast rules and you might respond differently to me. Also remember I was using a topical antibiotic plus taking Clonidine to help with the flushing episodes that my rosacea had developed into.

                        Still think it's essential you get a second opinon on your condition from someone who is experenced in treating rosacea.

                        Good luck

                        Peter

                        Comment


                        • #13
                          Pictures of me

                          OK. See below pics of me.

                          Bear in mind some were taken in the mirror, so the red looks like it is on the other cheek. Its on the right cheek and now some on the left, but much smaller and less red.

                          Pic 2 was a bad full flush. I don't take many pictures of myself like this!

                          Be interested to know what you think.

                          As I said, it not too bad at the mo, but if it is rosacea, I want to curtail it early!!

                          PS - Touch wood, I think the RLT is starting to work and I have the right doe finally

                          Comment


                          • #14
                            Keeping in mind, we can't see minute detail via photos, and based on the full flush, it certainly looks like rosacea rather than seb derm. Of course you may have a touch of the latter also. As I said, I can't see detail. But assuming other diseases are not suspected, such as carcinoid etc ( and you have not suggested they are), I would say, you have rosacea.
                            Previous Numerous IPL.
                            Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

                            Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

                            Treating for gut dysbiosis.(This is helping).
                            Previous GAPS diet. Have now introduced lots of fibre.
                            Fermented Foods. Intermittent fasting -16-18 hours.
                            Oral Colostrum. Helps reduce food reactions.

                            Comment


                            • #15
                              As an aside, do you find RLT increases your nose flushing?
                              I have noted some people find this. I did too, but then, I found flushing all round increased.
                              Previous Numerous IPL.
                              Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

                              Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

                              Treating for gut dysbiosis.(This is helping).
                              Previous GAPS diet. Have now introduced lots of fibre.
                              Fermented Foods. Intermittent fasting -16-18 hours.
                              Oral Colostrum. Helps reduce food reactions.

                              Comment

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