yellow nail syndrome

Hi Robbie, while you wait for 101dalmation to reply, it might be an idea to read the whole of this thread to get an idea of what YNS entails. Most of us have had it for years and so we have many symptoms such as bronchiectasis, sinusitis, lymphoedema, thyroid problems etc. Your cousin is a bit young to develop this but I know that I was having health problems long before the YNS was diagnosed so who knows when the problem began. There is a lot more info on the internet now if you google YNS but very little research has been done because it is so extremely rare. If you have specific questions then just ask away and someone will get back to you.

Katie

Hi Robbie, so sorry to here about your cousin, I'm in the uk here and have had YNS (yellow nail syndrome) for over 9years now. The doctors all over the world unfortunately don't know what causes this rare desease and there is no cure. Because of the rareness of this illness there's not a lot they know of it. But they are aware of conditions that come with it. All of us on here are more than happy to help you in anyway we can. Please feel ffree to ask any questions you wish, and we'll be more than happy to answer what we can. Feel free to read all that is on this forum and maybe there will be a few answers on here already for you, please tell your cousin not to feel alone as we are here for him/her. 

We also have a Facebook page too if you wish to join on there too. 

Debbie. 

i remember being so devastated when I was diagnosed and I was looking for someone who could tell me that it would be ok. My doctor was english and new about this site and told me to come here, it was so good to talk to someone who had the same experiences. one lady told me she had been cured but it returned it gave me hope.  i did all the researching and asked questions everywhere. For me the YNS was a result of something in the ingredients of Eltroxian. on the pill bottle it said levothyroxian and (GLS) its made in India, it contains chalk, and other fillers to bulk it up. something in it made my immune system go crazy.  i had days i was so swollen I had no energy and couldnt walk, my hands are wrinkley and the nails lifted yellow, Black and greeny shade, they would catch on things i would scream out in pain.  it was so ugly to see. I ended up frightened to touch things scared of pain. people looked at me sideways when they saw my hands and i was so self conscious. Too think it was a cheap imported substitute medication responsible. .. so i can only say look at your diet, your environment etc and try to work out what it is thats making your immune systems react. All the best. Lois

i remember being so devastated when I was diagnosed and I was looking for someone who could tell me that it would be ok. My doctor was english and new about this site and told me to come here, it was so good to talk to someone who had the same experiences. one lady told me she had been cured but it returned it gave me hope.  i did all the researching and asked questions everywhere. For me the YNS was a result of something in the ingredients of Eltroxian. on the pill bottle it said levothyroxian and (GLS) its made in India, it contains chalk, and other fillers to bulk it up. something in it made my immune system go crazy.  i had days i was so swollen I had no energy and couldnt walk, my hands are wrinkley and the nails lifted yellow, Black and greeny shade, they would catch on things i would scream out in pain.  it was so ugly to see. I ended up frightened to touch things scared of pain. people looked at me sideways when they saw my hands and i was so self conscious. Too think it was a cheap imported substitute medication responsible. .. so i can only say look at your diet, your environment etc and try to work out what it is thats making your immune systems react. All the best. Lois

Hi Robbie,

Sorry to hear about your cousin. I am 28 years old (female) and I also live in Canada (small world!). I am not 100% convinced I have yellow nail syndrome but that is the closest to a diagnosis I've been able to get. I have bronchiectasis and yellow nails (although they have improved over the last year) and I have been searching for more answers since my symptoms began 3 1/2 years ago. The only thing I have drastically changed in my lifestyle is I have begun exercising a lot more and I believe the increased cardio and perfusion has caused my nails to dramatically improve. My toe nails are still bad but they take much longer to grow anyways. I only have a few finger nails that are lifted and curved/yellow. My lungs continue to cause me trouble with a chronic cough and persistent bacterial infections (although I think exercising has also helped this) but I continue to take a puffer (a bronchodilator called symbicort) and I use a nebulizer with saline in it to help clean out my lungs. Currently I am working with my medical provider to investigate a condition called primary ciliary dyskinesia (PCD)- which is a condition that affects the functionality of our cilia which usually help clean out our respiratory system (sweep out the dirt) and they also are lined in the fallopian tubes which concerns me for fertility reasons (I would like to have a family in my near future). I'd be interested to talk to your cousin more about her symptoms as I have yet to find anyone else my age with yellow nail syndrome or with the symtoms I have. Living in Candada makes it a bit more difficult as bigger centers are further away from me and very few test for PCD. I am also intrigued because my last name is also Morris...too many coincidences here! Hope to hear back from you soon,

Victoria

Hi Victoria and Robbie

My name is Omri.

I am 34 years old , and having the same symptoms like you have -bronchictasis, sinusitis, and my 2 big toe nails are bad , years ago I had YNS in all of my nails, but it got better after I did years of yoga and Shiatsu treatments .

I'm having YNS since I was 10 years old , sinusitis started when I was 15 years old , and bronchictasis in the last 2 years.

The thing that really make me scared is the bronchictasis. That it doesn't feel like it's going to be better.

I didn't checked on PCD but i do have 2 adorable kids .

And didn't had fertility problems so I hope this can give you hope.

Week ago I found this forum and Its the first time I realize that it's not only me that having this crazy symptoms all together that nothing really helping for it.

But I'm sure there is something that can help us . We just need to keep searching for it.

I think the sharing the information is really important , this way we can give our doctors some new ideas.And

Like I sad before sorry about my English . I hope you can understand it

Feel well

Omri

Hi Neil, I'm in the uk also, and like yourself at first was very distressed with the condition, that's why I opened this forum up to find others with it. I have had my nails removed on 4 occasions over the last 9 years and due to have 2 more removed on the 18th October. But permanent this time. I've also had x amount of ct scans where they found fluid on my right lung in 2014. It was drained and super glued, in September this year (last month) I had my right lung drained, 700mg fluid came out but not had this lung super glued so may return again. I'm on inhalers daily, Pantoprazole for the acid reflux, and under going more tests for surgery on my stomache in the near future. I've constantly got a course of antibiotics in house ready because of the Bronchiectasis, have flu jab every year but still get cold. Also swelling of the feet and legs, etc etc etc. I have been told by one of my doctors they can remove my nails permanently then they will look into having some false ones glued on permanently to match my other nails. As they keep growing back yellow/green colour and so thick. Hope this helps you a little, any questions you wish answered don't hesitate to ask. 

By the way I'm in Yorkshire, 

sorry youve ended up with with this too.

Debbie. 

Thanks Debbie, My nails are yellow and with black down the sides and very uncomfortable. They are still just about growing but I'm losing my thumb and fore-finger nails. My ENT consultant has said that after 9 weeks of anti-biotics (which I and just finishing) he suggests an operation on my sinuses (there was fluid from the CT scan). It just seems as if there are many issues and no cures. So far no swelling of feet/hands etc and trying to keep active in gym 3 times a week as a discipline. Thanks very much for the information and for setting up this forum, pleased to be in touch with other sufferers - it makes you feel less isolated. I live in Hampshire. Neil

 

Hi Neil, you sound just like the rest of us who have YES. The symptoms appear over a period of time and until someone connects the dots, you are left in the dark. Don't be surprised if you do have bronchiectasis as it goes with the syndrome. The important thing is to start your antibiotics as soon as you get sinusitis or a chest infection to try and minimise lung damage. The yellow colour of the nails is due to them being so slow in their growth. This allows various bugs to infiltrate and cause the black colour up the edges of the nails. The thumbs and forefinger/toe are the most common nails to detach and the fourth toe/ginger nails are rarely affected. Finger nails do grow back OK BUT toenails become more discoloured and thicker. Some of us have had big toe nails detached permanently as they are prone to infection as they are detataching. You could ask your doc for a prescription for Itraconozole to clear the black discoloration. I usually take it for 2 weeks then have 2 weeks off then another 2 weeks. Keep with the vitamin E as it can be beneficial. I usually tape my nails now with micropore tape as they are ready to come off as it is quite painfup if you catch them and tear them off. Post back here if you have any questions.

Katie

I meant YNS using my phone at the moment and predictive text is making things up!!

Katie

Hi Katie, thanks for the very good advice and so good to hear from someone with the same problem as doctors seem to dismiss the issue as they don't understand. I had wondered about the black on the edge of the nails so will contact my GP. I get my CT results end october - many thoughts go round your mind as a very good friend passed away from lung cancer in his early 50's so always fear the worst. I don't smoke so consultant thinks Bronchiectasis especially given the time I have had my cough since Jan 2015. Getting old is depressing! Thanks for the quick contact - if there are 15 contributors to the forum I'm sure there are more than 100 sufferers in the world...

 

Hi Neil. I am sure that there are a lot more of us too but not much research has been done as YNS is on the very rare disease list. I also worry about lung cancer as my brother died of it 5 years ago aged 63. However he was a smoker and I am not. I have the same lung consultant as him too. He is very nice but more interested in cancer which he can help with rather than bronchiectasis which there is no treatment for apart from antibiotics when needed. I always have a course of emergency antibiotics with me so that I don't have to wait for the prescription to get from the docs to the chemist. I live in Durham and found that there is a bronchiectasis unit at the Freeman hospital near Newcastle so I am going to ask my Gp to refer me there after my next consultant appointment in November. Do you have any swelling of your feet/ankles or wrist or face? If so, suspect lymphoedema which is also part of the syndrome and creeps up on you without realising what it is. I usuakly try and get my legs rsised after lunch to get the swrlling down and I also have compression socks. Anothet thing which some if us have is hypothyroidism. YNS is thought to be an autoimmune disease so it is plausible that the thyroid could be affected. If you start to ferl really tired and you hsir starts falling out, then get your doc to do a blood test as you may need treatment with levothyroxine. I am not trying to turn you into a hypochondriac but uou eill find tht you are your own best physician with YNS. There are a few facebook pages which some of us are members of and I will gladly invite you over there when I get home as all my links ate on my laptop and I am away from home at theoment. Unless one of the others

Hi Neil. I am sure there are a lot more of us as YNS is classed as very rare. I also worry about lung cancer as my brother died of it 5 years ago. However he was a smoker and I am not. We do have the same consultant who is very nice but is more interested in cancer which he can treat rather than bronchiectasis which he cannot treat but just monitor with scans. I have found that there is a bronchiectasis clinic in a hospital near Newcastle so I am going to get my doctor to refer me after my next appointment with the consultant in November.

Sorry for the duplicate posts. I thought that the first one had been lost. I really hate 'smart' phones.

Katie

Thanks again Katie,

So much to look forward too! It would be great to have access to the facebook page. I live in Hampshire so not sure of the support network in the area. No swelling in feet, wrists or ankles - I try go to the gym 3 times a week, started in January for the first time in years and this at least makes me feel better and more active. You can't believe how good it is to be able to talk to people who know what is happening. Thank you! 

 

Hi Neil, 

pits Debbie here (101 Dalmatian) if you wish to join the Facebook page just type in Yellow Nail Syndrome into your search box and I will add you when you find our page, there is one open page and one private one. I'll log into Facebook now and await for you on there if you like. There's loads to read up on in the private group. 

Debbie jones. 

 

Katie do you live in Newcastle?

I'm from South Shields and I have suffered from yellow nail syndrome for 10 years now. I'm 30 years old now and I'm going through the most horrendous time as I gave birth in November to my baby boy Luca and we sadly list him at 6 days old. Iv recently been told he lost his life due to my conditions. I need answers to find out if this has happened to anyone else.

Thanks

Kate xx