Yellow Nail Syndrome

[PhillyDave]

My father has been suffering with the effects of Yellow Nail Syndrom for several years now. He's had pleurodesis on both lungs and is currently suffering with very profound lower extremity edema. Does anybody know of any way to find a physician in the Carolinas who have experience dealing with this disorder? His local physicians are stumped.

[katieuk52]

Hi Tracey - sorry for the delayed reply and I'm sorry that you also have this syndrome and it's many symptoms.

Katie.

[lorikmt]

I don't believe there are only 150 people in the world with Yellow Nail Syndrome.  It is very difficult to diagnose, and I think many more people have it than is reported.  I also have it - diagnosed in about 2006 after having symptoms since 2004 at the age of 48.  It started with nail changes and nail loss, which over the period of a couple years eventually resolved.  My predominant problem now is a severe productive chronic cough and chronic and continuous sinusitis.  I have been coughing day and night for almost 10 years now.  When I first developed the cough in 2004, I saw a pulmonary specialist who put me through every test under the sun and tried every treatment they could think of, to no avail.  I was then sent to a specialist at the University of Washington, who also had no idea what was wrong.  Finally I was diagnosed by a dermatologist in my area who specializes in fingernail conditions.  Since then, despite many visits to several ENTs, pulmonary specialists, etc, nobody has been able to help me. Most MDs have never heard of YNS.   So far I have been fortunate not to have developed lymphedema or pleural effusions.  Just wanted to let you all know you are not alone - I think many more of us sufferers are out here than anybody realizes.  

[Stan1950]

I'm pleased to find this forum on YNS as many of you are. My story is similar to others told here. I first developed a sinus problem in '98 and my nails began showing the symptoms soon after. I was diagnosed probably 5 years later by Dr Fleckman at the University of Washington in Seattle WA. After the diagnosis I developed lymphoedema. I thought I may pass on some of what I do to control the symptoms.

I discovered first that taking supplements of nutritional yeast (not brewers) has helped my nails very much. I take up to 9 double "O" capsules per day. Three per meal. I also take vitamin E though I can't say  if it has much effect. It can't hurt. I have started and stopped taking the Nutritional Yeast several times and observed my nails getting better and worst concurrent to my taking it or not. My nails (except for big toes) are very healthy. The Yeast need to be fresh and not exposed to sunlight because the B compounds will degrade.

I also irrigate my sinuses every evening using a "Water Pic" with a nasal adapter. I mix a saline solution using a teaspoon of sea salt and a tea spoon of baking soda per two cups of warm water. Information on this process can be found on the internet. This cleans accumulations of mucus from my sinuses helping me sleep and feel better over all. I quit taking antibiotics unless I really need to because their over use, I feel, can lead to further problems in the sinuses.  

This, as you all know is a perplexing condition and so little known and understood. I have educated more doctors about my condition than I have found who know of it. I have had some actually react with incredulity and tell me I don't know what I'm talking about. I quickly tell them to google it at the Mayo Clinic and find they become quite chagrined upon discovering I know what I have. I've also had doctors tell me if I fix my nose I'll fix my nails and also others tell me what's effecting the nails is causing the nose problems. So little is known but this forum is a repository of information learned by persons who know this condition and are trying to find answers. I hope my my information can at least alleviate some of the symptoms.
Stan Hain, Seattle WA  

[Traceypad2013]

Hi

Would love to talk to you about your condition as I have this too. It's been very difficult and you think you are alone

Please get in touch. Are you in the uk?

Tracey

[Traceypad2013]

Hi Katie

I have read your story and it rings so many bells for me!  I am 49 and was diagnosed with YNS after three years of suffering coughs, sinititis and what I thought was nail infections!  It is so sad that this condition is so rare the doctors misdiagnose. I have all symtoms too. My nails were just dreadful discoloured thick, no cuticles.  Three years later they have slightly improved but are still detached and a strange shape. It is so nice to know that others know exactly how you have felt and how hard it has been to deal with.  I had a CT scan and really had to push hard for that and it showed  bronchiastis.  I have also been taking vitamin e for about 2 years and this has helped my nails.  I forgot to mention that I am from the uk. Are there really only 150 cases in the world of this condition?  

Would love to hear from you all

Tracey

[katieuk52]

Hi Ken, I haven't really looked for further info or forums since my initial diagnosis until recently which is when I found this site.
I have looked for a consultant in the UK who has an interest in YNS but haven't been able to find one. I must therefore, look after my own health and insist on regular blood tests.
My GP cannot refer me for a CT scan to monitor the bronchiectasis and so if my chest gets any worse, I will have to get a referral to a chest consultant for a CT scan through him.
Things are a bit different in the UK with our NHS as funding is becoming more limited and so GP's will only refer a patient for a treatment if it is cost-effective. The average person in the UK doesn't carry health insurance as the NHS has always provided a good service in the past.
If I find any new articles on YNS or it's treatment I will post here but I'm very doubtful that we'll find very much at all.

Katie