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Misdiagnosed several times. What do I have? I'm desperate

Posted , 6 users are following.

Kosmikka
Kosmikka

Dear all,

I have been dealing with a skin problem since January. First redness, then some red spots, irritation, inflammation, etc. First diagnosed with rosacea, prescribed topical antibiotics, made it worse. Second dermatologist also said it was rosacea, but prescribed doxycycline. Worked for a bit, but then the redness and inflammation came back, along with the spots. Third dermatologist did patch testing and turned out I am allergic to nickel, epoxy resin, sodium methabisulphite, palladium chloride and mercurium. Ditched eyeglasses, sunglasses and anything containing that, was prescribed with a topical steroid and elidel cream, but after some days, the condition went worse. Still the same. Irritated, flaky, inflamed. I have been to another dermatologist and this one has diagnosed with peri facial dermatitis, prescribed more oral antibiotics and  keep on prescribing paraffin based creams, although I have read that's a trigger for peri facial dermatitis and also because my skin doesn't agree with it, it makes it more angry and dry.

At this point I don't know what to do. I have spent loads of money, time and effort, with no results, it seems to be worse. My boyfriend thinks I have a depression, and it's really affecting my personal and professional life. Can't concentrate, all I think is about this problem. Please help me. I hate myself. I just wanna be normal again.

Thank you.

0 likes, 20 replies

20 Replies

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  • larkie11
    larkie11 Kosmikka

    Posted

    Would be helpful if there are pictures, cause red irritated dry skin just sounds like eczema to me.

    For me i have eczema around the mouth, where it gets red and dry and super itchy when i get stressed (burning sensation as well)

    But no matter what issue you have, please do not use steroid creams, it just supresses whatever you have, once you stop using it, it will come back if it is a case that keeps flaring up every now and then.

    Do not go on a long course of antibiotics as well, it may cause yeast infection like candida which is not something you would want.

    For my case of eczema, i do not use anything since even moisturizers make it redder, i just splash water. Please dont hate yourself, i constantly look at my face and just feel like crying, but find something that distracts you from thinking of the issue at hand. You can try natural remedies found online - things like turmeric etc. None of them worked for me but they might work for you.

  • aprilco78
    aprilco78 Kosmikka

    Posted

    I understand because I also have sebhorrheic dermatitis. It has been on and off for years. I keep trying everything too. I hope you find what works for you.
  • Kosmikka
    Kosmikka

    Posted

    Thanks a lot for your responses.

    At this point, I just don't know what I have. If it's peri facial dermatitis then why I am told to use heavy ointments with paraffin, if it's known to be a major trigger. If it's eczema then why I'm on doxycicline. What is it? Or is it just that my face gone crazy after using a thousand different crears? Why not even a private dermatologist can make a proper diagnosis? So so frustrating sad

    • larkie11
      larkie11 Kosmikka

      Posted

      Doxycycline is normally for peri oral dermatitis, since normally creams do not help at all. Have you asked for a skin culture or biopsy for accurate findings?

      Different derms have different ways they think work for a certain issue, that may be why your derm prescribed you something that may be a known trigger but he or she thinks that it may work for you.

      For my condition i have seen at least 4 derms and they all came to the same conclusion.

    • aprilco78
      aprilco78 larkie11

      Posted

      What do you have Larkie?

      I have seborreic dermatitis., I get flaking and red crusty around my hairline and ears and neck.

    • larkie11
      larkie11 aprilco78

      Posted

      I have eczema and chronic hives... although my eczema isn't on a wide area, its around my mouth and makes it hard to talk/eat whenever it flares up(which is everyday) since it just becomes so dry and red.

      Takes away my confidence as well since when you talk to ppl the only thing that they notice is your face.

  • micky69730
    micky69730 Kosmikka

    Posted

    Hi, I used to feel exactly the same as you do & I really feel for you. I have eliminated SLS (sodium laurel sulphate) from all of my products, put SLS & skin problems into a search engine & I'm sure you will be very surprised to see this irritant is in all of your shampoos ( Even the medicated ones for dermatitis ) their was a tv show on SLS. (Trust me I'm a doctor) UK. It's even in toothpaste.

    Holland. & Barrett do a great SLS free range. I have been using shampoo by Jasõn. & washing my face day & night with Dead Sea salts, my skin has been fantastic for 8/9 months now after 20 years of ups. & downs & near depression.

    I wish you luck & hope you find your answer

    • Kosmikka
      Kosmikka micky69730

      Posted

      Hi Micky, and thanks for your reply.

      How did you find out SLS was the culprit? Did you have the patch testing done? I have been tested and I am allergic to nickel, epoxy resin, sodium metabisulphite, palladium chloride and mercurium (don't remember what follows), so basically metals. I can't wear glasses anymore and I have checked my cosmetics and anything I put on my face to make sure they don't include those components. But it didn't turn out I was allergic to anything else. I am currently not using cosmetics with SLS, only the toothpaste and maybe the shampoos... So what's your diagnosis, what kind of condition do you have? I have been diagnosed with rosacea first, then the allergy (obvious), now perifacial dermatitis (although my problem is not around the mouth, more like on the cheeks) When I didn't know I was allergic to glasses the redness and bumps were on the place the glasses were contacting my skin (cheeks and nose). It has improved since then, but since I had to use a topical corticosteroid for a couple of weeks, now that zone is irritated, flaky, kinda inflamed, red... and I have tried so many products during this period of time I think I have made the condition worse. 

      I tried yesterday plain paraffin without any other ingredient, and it seemed to be alright. I am wearing that today with my makeup and it's a bit uncomfortable, but at least my skin is not burning. Guess it is extremely dehydrated so that's why.

      Thanks again for your advice. Will check on Holland & Barret stuff.

    • larkie11
      larkie11 Kosmikka

      Posted

      Unfortunately, eliminating SLS might help that person, but it might not for you. You can try eliminating SLS for a few weeks. I have done that and didn't see any improvements. I do not recommend using steroid creams at all since it just hides the issue, it doesn't solve anything.
    • Kosmikka
      Kosmikka larkie11

      Posted

      Yes, I am not putting anything on my face with SLS and honestly I don't think that's the problem, although it is a known irritant. My irritation/discomfort is mainly on the nose and cheeks close to it. But i don't have rosy cheeks like the typical rosacea patient. 
    • larkie11
      larkie11 Kosmikka

      Posted

      Sounds like eczema then.. have you searched up any facial eczema pics and compared yours?

      For eczema, the skin will normally feel dry, like its burning and sometimes, super itchy. If yours are like that, then it will be highly likely to be eczema since those are my symptoms and what i have heard from others as well.

    • Kosmikka
      Kosmikka larkie11

      Posted

      I have attached a pic so you can see more or less what it is. Some days is better than others, but it's been like that mostly for the past 8 months. Blotchy, red. Never was like that before, not before purchasing the glasses and wear them for 7 months. But it's been a month since I don't use glasses and still is kinda like that. I guess having put steroids, then elidel, and taking antibiotics (plus the 1000 potions and lotions i have tried) might have aggravated it. I have looked for eczema pics but those don't really have to do with mine. And yes, feels dry and burning, most of the time.
    • larkie11
      larkie11 Kosmikka

      Posted

      Ok, that definitely does not look like perioal dermatitis, looks like rosacea since it is on the cheek area, but could also be eczema. My eczema does not look like those pictures i have seen as well. Mine is just angry red patches around my mouth.

      But the burning can also be attributed to rosacea not just eczema.

      I totally understand about the 1000 potions and lotions, I'm still trying out products but i also believe that trying out too many can make it somewhat worse..

      But i believe that the key to treating this is to find out what triggers it, whether internally or externally. I personally am hoping to go on a 10 day water fast soon to see if it helps out with my eczema in any way, i think some diet/lifestyle changes are in order if not done yet.

      You stated some days are better that others, maybe you can figure out why they are so? Like maybe on those days you avoided a certain something/ate a certain something.

    • Kosmikka
      Kosmikka larkie11

      Posted

      I honestly don't know. I don't think it has to be with something I eat... have tried to go dairy free, or avoid this and that and nothing worked. All the dermatologist I have visited have told me it is not a food allergy. I don't eat spicy food, drink alcohol (well, you know, only if I go out at some point, but never wine) and I don't eat wheat because I don't like it. 

      The paraffin seemed to worked last night cause I have woken to a more calmed skin, but wearing that with make up makes me feel very uncomfortable. But the doctor told me to use Hydromol for 5 days and see how it goes. Have used Diprobase and Oilantum before, but they didn't work. I guess any other ingredient makes me feel uncomfortable. Hopefully it will work, the problem is what to use next. I think my skin is stressed out... in these 8 months I have used and tried more stuff than in my entire life I think.

       

  • micky69730
    micky69730 Kosmikka

    Posted

    Hi ,

    I have been diagnosed with Seb Derm with traces of Rosacea. I have spent thousands on products of all types & trawled the internet for help & a cure. As mentioned SLS may not be your answer but as it worked me I can only offer it as a cheap recommendation. I was surprised how many products it is in. You mentioned it is on your cheeks have you considered changing your pillow case every night ? Just a thought.

    Best of luck

    • Kosmikka
      Kosmikka micky69730

      Posted

      I have tried that too, but then you think I could be allergic to detergents or something? As stated before, I have been patch tested with more than 95 components, and only was positive on some metals. Nothing for perfumes and stuff like that.

      So what are you currently using for your skincare routine? Are you following any treatment?

    • micky69730
      micky69730 Kosmikka

      Posted

      I forgot to ask if you are in the UK. ?

      I wash with yarden dead see salts (boots) day & night then I use Averno skin relief (cooling) moisturiser day & night. (Boots) I shower with yarden dead see shower cream (boots) & wash my hair with Jasõn dandruff relief shampoo. (Holland & Barrett)

      I also use dr organic toothpaste (holland & Barrett )

      I shave with King of shaves oil (boots) all SLS free & not to bad in fragrance etc. the shampoo does smell of sulfur which I got used to.

      I threw a whole box of potions & lotions in the bin & now stuck to what I know.

    • Kosmikka
      Kosmikka micky69730

      Posted

      Hi Micky

      Yes, I'm in the UK. Can't use Aveeno cause it has benzyl alcohol and irritates my skin. Also, paraffin once again proves doesn't match with my skin. Went back home, washed face and it is so irritated, even with red spots(didn't have those before) It feels so tight now and stingy, but can't put anything on it. Oh god, this is so frustrating

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