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yellow nail syndrome

Posted , 19 users are following.

101dalmation
101dalmation

I am 46 years of age, and for the past 2 years have been asking my doctors what was wrong with my nails (fingers and toes) but getting no answer, till finally i was refered to a dermatolagist at hospital, who diagnosed it as YELLOW NAIL SYNDROME which is a rare desease, and only 100 other cases have been known to have it. thats why ive called myself 101 dalmation as i may be the 101 patient lol. I was relieved in a way to find out what it was but curious as to why i have got it. but there is no answer to my question as no one knows of yet where it comes from. So i would like to share this with anyone who wishes to read about it, and ask any questions about it. I have taken photos of my nails for future ness if anyone requests to see them.

thank you for letting me express this out into the open.

101 dalmation

3 likes, 142 replies

142 Replies

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  • Guest
    Guest 101dalmation

    Posted

    Hi Lois & Helen, it's good to share information. I just wondered whether you both get any ongoing care from your GP or hospital consultant or if you have access to a YNS specialist?

    I was diagnosed by a consultant dermatologist, had photograph's taken of my finger and toenails ( very yellow at that time), given support socks for the lymphoedema, Itraconozole for the nails and than had a chest X-ray which showed nothing. On my return visit to the hospital, I insisted that I had a CT scan to show the existence of the bronchectasis as X-Rays are no good at this. It did show that both lungs are affected but I was told by my GP that there is no treatment for it apart from deep breathing exercises, which I do. I was discharged from dermatology as they had done what was required for the moment. I was told to see my GP for antibiotics when I get sinusitis as I need to avoid chest infections. I have had 2 infections this winter requiring Amoxycillin for a week with the first chest infection and 2 weeks with the second.

    My cough is particularly bad at the moment and my feet, ankles, face, hands and wrists are quite swollen with the lymphoedema. It seems that it comes in waves - things die down for a while and then the swelling, cough, sinusitis all start up again. I'm not complaining, just making observations.

    I think that I am soon going to go back to my GP to see what can be done about the lymphoedema - I have the feet of an 80 year old at the moment which isn't very attractive smile Do you have a specialist in YNS in your respective countries?

  • lois58127
    lois58127 101dalmation

    Posted

    hi again, i had my third appointment with Dr Raj who is a skin specialist this week, i have also had an appointment with an endocrine specialist and a respiratory specialist, (Lung function test and scan)and 3 differant GPs. Raj has just arrived back from a world conference with skin specialists and tells me he discussed my case along with photographs of my nails. Raj told me this week there is no cure for this. also mentioned to me that most of his patients with skin problems can be traced back directly to stress. There are drugs to control the immune system Methrotrixate which an aunty of mine is using for rhumatoid arthritis i asked him about using it for me.  he told me the damage the drug does to our liver and kidneys is far worse than the condition. My mother had auto immune diseases and the drugs she was on ruined her liver and kidneys she died at 66 of ceriouses(spelling?) of the liver. so to avoid damage we probably must try natural remedies and reducing stress levels. unless i am getting worse i am to cope on my own from now on. I have a years supply of ointments for infections. I hope you are warm and dry and try to avoid people with coughs and colds I only have the phlem in the broncials but an xray and scan to compare if the condition gets worse. I try not to go on antibiotics as the condition is immune related and also did not have a flue injection as i dont want to upset it either. today i kept banging my middle finger on my right hand the nail is completly white and raised right up to the cuticle.. i have to use a toothpick to clear away bits and pieces up there..eeek. love to chat. lois
  • Guest
    Guest 101dalmation

    Posted

    Hello again, I am glad that you have a specialist to look after you care lois. I had to be discharger from my dermatology consultant as there was no more to be done in her department. I actually saw a chest consultant when I went to see him for a sleep study test for sleep apnoea. He was very interested that I had YNS even though he was sceptical that I had YNS when I told him at my first appointment with him. I assured him that the diagnosis would be in my hospital notes if he cared to look and that was that. Sleep Apnoea was diagnosed, treatment options were discussed with a respiratory nurse and I was discharged from that clinic too. I agree with you about using natural treatments and supplements as much as possible and I also take Vitamin E, C, D, Selenium etc. I only take antibiotics when I have a secondary bacterial infection in my sinuses or my chest. I finish the course and don't abuse them. I also refused the flu jab. Thanks for the information about Methrotrixate - I'll bear that in mind. It's great having others to discuss symptoms with and compare treatment with and I feel that the internet is the only way that we will find each other.
  • lois58127
    lois58127 101dalmation

    Posted

    it is so good to talk to other sufferers of YNS. i felt so alone, being the only person in NZ to have it. I get frustrated having to explain the illness to nurses, salespeople at the chemist shops, differant doctors, and then just the general public when i notice them staring at my nails.. I have a cry sometimes about it. i am so grateful for this website and the people who open up about their experiences. thank you so much you are really appreciated.
    • Guest
      Guest lois58127

      Posted

      Hi Lois, I know what you mean and I also try and hide my fingers when out in public. I do use nail varnish when all my nails are present and keep filing down the thickness where I can.

      I also get fed up trying to convince medics and others that YNS is not another name for a fungal infection of the nails!! It is unfortunate that the Syndrome was not given a different name or named after the person who first diagnosed it.

      Try not to get too upset about things - just remember that you are not alone smile

       

    • helen01813
      helen01813 Guest

      Posted

      Hi Katie, sorry I did not see your post until now. You really seem to have full blown YNS which as we all know can be terribly uncomfortable. I wes telling Lois about special finger stalls which I dont think I would have survived without when my nails were bad. I lost 9 finger nails in total which have all grown back. This is similar, it comes in a long tube shape so tou can cut off as you need it. Cut it longer than you think you will need, just seems to work better. I also got latex disposable finger stals in the chemistl to put over the other ones if I was doing anything dirty or wet. My two bigtoe nails are effected as in dark and misshapen and very thick. That said they dont cause too much bother other than 6monthly visits to the podiatrist. I have learned the hard way that protection of my nails is paramount.

      Yes like you it was a dermatologist who diagnosed me initially but I was also going to a respiratory specialist due to chronic chest problems. Must say they have been great but like you it is frustrating having to explain the significance of it to others. I found some great information on Google Scholar. I do think because it is so rare we really have to educate ourselves. As far I I have understood you are right there is no cure, it is symptom management. I also have some lymphodema, my left leg/foot and right side of my face. No cure for that, if you come up with anything, do let me know.

      Take care and lovely to have you join in.

      Helen.

      Emis Moderator comment: I have removed the link as it gave a page not found message but also we do not publish links to selling sites. Please use the Private Message facility to exchange these links if required.

    • Guest
      Guest helen01813

      Posted

      Hi Helen, it was good to see your post and advice about nails. I am lucky in that, since I lost most of my fingernails initially, since I started taking 800mg vitamin e each day, my nails did grow back. My thumb and forefingers are rather thick and curved but look reasonable enough when I file the thickness down and use nail polish. Typically of YNS, the 4th finger and toe nails remain unaffected!!

      I didn't know about Google scholar so Thanks for that info - I will have a look. For the lymphoedema, I just wear my surgical socks from morning till night to try and prevent my skin from being stretched too much with the swelling. I do get my Thyroid levels checked twice a year, though my level is very good now with levothyroxine, iodine drops and the use of seasalt from the beaches of Normandy. I also have a chest X-Ray twice a year, I'd rather have a CT scan to monitor the progress of my Bronchiectasis but my GP can only request X-Rays - bit of a waste of time really. However, my brother died of Lung cancer 3 years ago so I feel that I should have the X-rays as coughing incessantly is also a sign of lung cancer. I'd rather play safe & get it done.

      That's enough of me - I get obsessed about YNS from time to time smile

      Regards to you and I hope that we all keep in touch here

      Katie

       

  • lois58127
    lois58127 101dalmation

    Posted

    hello all, its been a while since we spoke. I was wondering how you are all getting on. as to me. well, i have had 2 visits to podiatrists for my toes and fingers, they are looking a lot better but the ends of my fingers split and hurt if i try to do anything like pull a weed or peel a potato. I use foban cream for it and the pain goes away. a couple of fingers and toe nails look to be coming right. i dont have the cough now. but i have noticed a bit of swelling in my legs. i turned down a flue injection this winter as i dont want to upset the immune system. taking vit C and magnesium daily. low carb diet with lots of veges. managing to stay within 10 kgs of my normal weight is a challenge. I would love to hear how you all are. hopefully you have come right and there is hope for me.  off to the skin specialiast who dosnt have a cure only management. wondering if i should ask to see endocrine specialist again.
  • tracypodgill
    tracypodgill 101dalmation

    Posted

    Hi I am a podiatrist and have not seen anyone with this condition, could you send pictures so i can do further research on your condition? Thanks Tracy
    • Guest
      Guest tracypodgill

      Posted

      Hi tracy. I am also a Podiatrist and didn't even diagnose myself. I was told at college that I would never see a case and so I didn't really remember the signs & symptoms or a differential diagnosis.

      Katie

    • Suzyk
      Suzyk tracypodgill

      Posted

      I have attached a couple of pictures - don't know that they show the color enough.. it's kind of a gold yellow.   Hope it helps
    • 101dalmation
      101dalmation Suzyk

      Posted

      your nails look just like mine, in fact ive just had the thumb nail on right hand removed again. so i now have two big toe nails removed and two thumb nails removed. i am due to have the forth finger on right hand nail removed in a few months time.
    • 101dalmation
      101dalmation tracypodgill

      Posted

      i hope you recieve these pics Tracy as they were taken over the last 8 years up to present date. hope they help with your research, i have asked in the past if the sergeons wanted to keep my nails for tests and research but they said with it being so rare they do not know of anyone that would research them.

      Debbie (101 dalmation)

       

    • 101dalmation
      101dalmation Suzyk

      Posted

      Yes i can see the yns in your finger nails. they look quite sore as they are half way down your fingers on some of them. this is what mine were like when i first got yns. they are improving now and growing well apart from the two thumb and two big toe nails and the forth finger on right hand. which i dont think will ever grow normal again. until they find a cure for it.
    • Suzyk
      Suzyk 101dalmation

      Posted

      Mine are getting much worse...no cuticles and turning black... totally discouraged...
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