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Yellow Nail Syndrome
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.
Katie,
I've never had any doctor willing to write up my YNS case in a medical paper. With so few people having YNS, it doesn't seem worth their time and engery. This is a shame because medical papers (like what you see on PubMed) are about the only way to learn anything.
The people who post in this forum and other forums, rarely post, and even if they do, it appears they don't return. It's possible to directly send a message to posters, and I did this one time. I only heard back from one person (that's how I talked to te father of the young woman who died. There used to be a Yahoo Groups forum for Yellow Nail Syndrome, and it was active, but was closed down because the person who formed it started a forum on CareShare. But when I went there, it never had anything.
Keep me informed --it's great to have someone else to talk to.
Ken
I've never had any doctor willing to write up my YNS case in a medical paper. With so few people having YNS, it doesn't seem worth their time and engery. This is a shame because medical papers (like what you see on PubMed) are about the only way to learn anything.
The people who post in this forum and other forums, rarely post, and even if they do, it appears they don't return. It's possible to directly send a message to posters, and I did this one time. I only heard back from one person (that's how I talked to te father of the young woman who died. There used to be a Yahoo Groups forum for Yellow Nail Syndrome, and it was active, but was closed down because the person who formed it started a forum on CareShare. But when I went there, it never had anything.
Keep me informed --it's great to have someone else to talk to.
Ken
Hi Ken, Thanks for the info on pleural effusuins - it sounds really awful but I'm glad that you have found a solution of sorts. I don't know how we'll get any further ahead on treatments as there doesn't seem to be a great lot of research going on - especially in the UK. When I was first diagnosed at dermatology, they took photographs of my finger & toe nails. I told my GP & he said that the photo's would turn up in a book at some point but that's as far as any interest was shown.
I attended a chest consultant for sleep apnoea in 2011 and the consultant was more interested in the YNS than the apnoea as I was the only person he'd seen with the condition. He asked me hod I'd been diagnosed & I showed him my toenails, told him about the cough, sinusitis, lympheodema etc. He was a bit sceptical till he saw it for himself.
So, unless I find a specialist in the UK, I have to rely on my own judgement as to when I need antibiotics, Itraconozone etc. and mg GP just prescribes them for me. I have an X-Ray of my lungs x 2 each year and I'm waiting for my annual CT scan to check on the bronchiectasis. I see our practice nurse for checks on my respiratory function and my hypothyroidism but otherwise, I just get on with it & watch for any deterioration in any of the symptoms.
Well - that's the 2 of us, the original poster & one other from the Carolinas, maybe Bridget, Dan from Sweden, Coughing Girl and AP00083. Eight people in total all looking for information. I hope the others come back to this section and let people know how they are doing.
Regards, Katie
I attended a chest consultant for sleep apnoea in 2011 and the consultant was more interested in the YNS than the apnoea as I was the only person he'd seen with the condition. He asked me hod I'd been diagnosed & I showed him my toenails, told him about the cough, sinusitis, lympheodema etc. He was a bit sceptical till he saw it for himself.
So, unless I find a specialist in the UK, I have to rely on my own judgement as to when I need antibiotics, Itraconozone etc. and mg GP just prescribes them for me. I have an X-Ray of my lungs x 2 each year and I'm waiting for my annual CT scan to check on the bronchiectasis. I see our practice nurse for checks on my respiratory function and my hypothyroidism but otherwise, I just get on with it & watch for any deterioration in any of the symptoms.
Well - that's the 2 of us, the original poster & one other from the Carolinas, maybe Bridget, Dan from Sweden, Coughing Girl and AP00083. Eight people in total all looking for information. I hope the others come back to this section and let people know how they are doing.
Regards, Katie
Katie,
Regarding the pleural effusions, I was having a harder and harder time breathing, and got fatiqued quickly. I went to a pulmonologist, and he did an ultrasound and saw that the right pleural cavity was filled up. The left side had no fluid.
He did a thorocentesis and removed 1.7 liters of fluid. I went in every couple of weeks for thorocentesis, which really helped my breathing, but about 6 months later I started feeling like I couldn't breath again, even after getting a thorocentesis. The doctor discovered the left side had a pleural effusion--removed 1.7 liters of fluid. That's when I had a chemo port put in on the right side; and about a year later had another port put into the left side. The chemo ports are embedded under the side, so there is no tube dangling outside the body. I access each port using a needle that is attached to a syringe, and remove the fluid myself.
I have top doctors and have even talked to Dr. Maldonado, who is an authority in the US for YNS. Still, I have discovered that it's up to me to find new treatments, so I comb through the Pubmed website to see what is going on. I had high hopes about the titanium / titanium dioxide, and for the Octreotide (Sandostatin), and even more for the IVIG, but though all these helped other YNS people, they really haven't helped me.
Initially, after the pleural effusions were discovered, my doctors wanted to do a pleurodesis (basically, the outside of the lung is "glued" to the pleural cavity lining, thus blocking the fluid from coming in). The procedure just blocks the fluid from going into the pleural cavity--that fluid can flood the rest of the body. For some YNS people this worked out OK, but I saw a medical study where the person died (organs were suffocated from fluid), and talked to a father of a 27 year old woman who had a pleurodesis (didn't work) followed by a thoraic ligation (operation that ties off the vessels that brings fluid into the pleural cavity); she died when the fluid went into the tissue (gained 100 pounds). At least you can drain it from a cavity. I refused this treatment and insisted on trying other routes--and I don't regret this decision..
Hopefully, you don't have pleural effusions--and won't need to deal with this. Only about 33% of YNS people get pleural effusions. But if you do get them--its worthwhile to understand the options.
Oh, I saw your posting on Rareshare. On both PubMed and Rareshare, your posting was the first I've seen in years.
Ken
Regarding the pleural effusions, I was having a harder and harder time breathing, and got fatiqued quickly. I went to a pulmonologist, and he did an ultrasound and saw that the right pleural cavity was filled up. The left side had no fluid.
He did a thorocentesis and removed 1.7 liters of fluid. I went in every couple of weeks for thorocentesis, which really helped my breathing, but about 6 months later I started feeling like I couldn't breath again, even after getting a thorocentesis. The doctor discovered the left side had a pleural effusion--removed 1.7 liters of fluid. That's when I had a chemo port put in on the right side; and about a year later had another port put into the left side. The chemo ports are embedded under the side, so there is no tube dangling outside the body. I access each port using a needle that is attached to a syringe, and remove the fluid myself.
I have top doctors and have even talked to Dr. Maldonado, who is an authority in the US for YNS. Still, I have discovered that it's up to me to find new treatments, so I comb through the Pubmed website to see what is going on. I had high hopes about the titanium / titanium dioxide, and for the Octreotide (Sandostatin), and even more for the IVIG, but though all these helped other YNS people, they really haven't helped me.
Initially, after the pleural effusions were discovered, my doctors wanted to do a pleurodesis (basically, the outside of the lung is "glued" to the pleural cavity lining, thus blocking the fluid from coming in). The procedure just blocks the fluid from going into the pleural cavity--that fluid can flood the rest of the body. For some YNS people this worked out OK, but I saw a medical study where the person died (organs were suffocated from fluid), and talked to a father of a 27 year old woman who had a pleurodesis (didn't work) followed by a thoraic ligation (operation that ties off the vessels that brings fluid into the pleural cavity); she died when the fluid went into the tissue (gained 100 pounds). At least you can drain it from a cavity. I refused this treatment and insisted on trying other routes--and I don't regret this decision..
Hopefully, you don't have pleural effusions--and won't need to deal with this. Only about 33% of YNS people get pleural effusions. But if you do get them--its worthwhile to understand the options.
Oh, I saw your posting on Rareshare. On both PubMed and Rareshare, your posting was the first I've seen in years.
Ken
It's good that we can share info even if we cannot be helped. As long as I carry on the way I am I will cope but the lymphoedema in my ankles, feet & arms does seem to be getting worse. My cough is also getting worse - all day and when I'm turning over at night. I have sleep apnoea as well which causes me o stop breathing for a short while and this wakes me up then the cough starts again. Can I ask how you know you have pleural effusions - what are the symptoms for that. I am getting breathless going upstairs now and wonder if this will get worse. My finger nails are pretty good now apart from my forefingers and thumbs although my toenails are all still very yellow but symptomless. I am sorry that you have so many problems with fluid build up - you seem to have a very bad case of YNS. It's the fact that so little is known about it that is so frustrating. Take care
Katie
Katie
There are only about 150 YNS people world-wide. I have the whole condition: yellow detaching nails, lymphedema, and pleural effusions. I have also developed ascites (fluid build-up in the stomach cavity). I think this is caused by the loss of protein/nutrients from getting the pleural cavities drained. (Starving children get the extended bellies from lack of protein.)
I was OKed for getting monthly IVIG infusions, which helped two other YNS people with pleural effusions and lymphedema. I see a definite improvement in the lymphedema for a few days, but then it returns. Since I don't have a B or T cell deficiency, getting OKed was very very difficult.
I also get a monthly shot of Sandostatin Lar depot, which helped two other YNS people with pleural effusions and lymphedema.
I also take thyroid medication.
I have no titanium metal in my body (had one titanium dental pin removed, aand replace 5 gold caps with zirconium) and still watch my intake of titanium dioxide (white food coloring used to make skim milk white, food white; coat pills, etc).
My right pleural effusion has dried up, but I remove about 250 ml/day on the left side, using the chemo port to drain it. I get the ascites drained at the hospital about every week (removing about 7 liters each time). I get IV albumin with the ascites procedure (to replace the protein-rich fluid that gets removed.) Albumin helped other YNS people.
I take antibiotics every day. I took Itraconazole and vitamin E for a while, but it didn't help. Basically, I am getting every advance treatment there is--and nothing is really helping. My appetite is good, but if you look beneath the lymphedema, I am very thin. I was on TPN (IV nutrition) for a short while, but got an infected port, which sent me to the ICU. I think this is why I got OKed for the IVIG.
My YNS started in 2005 with a cough and sinusitis, then the nails, In 2007, my ankles started swelling. In early 2009, I had trouble breath, and discovered a right pleural effusion; later that year, there was pleural effusion in the other side. I began the monthly Sandostatin in 2009.
In 2011, I had a chemo port put into one lung cavity. In 2012, I had another chemo port put into the other side. Shortly after that the ascites started. Started the monthly IVIG Dec 2012. My lymphedema has gotten worse (only my shoulders and upper arms don't have it).
I continue to search for new treatments. Most YNS people don't get symptoms as bad as mine. A leading authority says it mainly benign--unfortunately, I'm the exception. I have read that the nails are the barometer of YNS--so if the nails are improving, that is a good thing.
I was OKed for getting monthly IVIG infusions, which helped two other YNS people with pleural effusions and lymphedema. I see a definite improvement in the lymphedema for a few days, but then it returns. Since I don't have a B or T cell deficiency, getting OKed was very very difficult.
I also get a monthly shot of Sandostatin Lar depot, which helped two other YNS people with pleural effusions and lymphedema.
I also take thyroid medication.
I have no titanium metal in my body (had one titanium dental pin removed, aand replace 5 gold caps with zirconium) and still watch my intake of titanium dioxide (white food coloring used to make skim milk white, food white; coat pills, etc).
My right pleural effusion has dried up, but I remove about 250 ml/day on the left side, using the chemo port to drain it. I get the ascites drained at the hospital about every week (removing about 7 liters each time). I get IV albumin with the ascites procedure (to replace the protein-rich fluid that gets removed.) Albumin helped other YNS people.
I take antibiotics every day. I took Itraconazole and vitamin E for a while, but it didn't help. Basically, I am getting every advance treatment there is--and nothing is really helping. My appetite is good, but if you look beneath the lymphedema, I am very thin. I was on TPN (IV nutrition) for a short while, but got an infected port, which sent me to the ICU. I think this is why I got OKed for the IVIG.
My YNS started in 2005 with a cough and sinusitis, then the nails, In 2007, my ankles started swelling. In early 2009, I had trouble breath, and discovered a right pleural effusion; later that year, there was pleural effusion in the other side. I began the monthly Sandostatin in 2009.
In 2011, I had a chemo port put into one lung cavity. In 2012, I had another chemo port put into the other side. Shortly after that the ascites started. Started the monthly IVIG Dec 2012. My lymphedema has gotten worse (only my shoulders and upper arms don't have it).
I continue to search for new treatments. Most YNS people don't get symptoms as bad as mine. A leading authority says it mainly benign--unfortunately, I'm the exception. I have read that the nails are the barometer of YNS--so if the nails are improving, that is a good thing.
Hi everyone. I live in the UK. I' glad I found this forum and that I'm not alone.
I was diagnosed with YNS at the age of 57 years in November 2009 after a year when my GP suspected my constant cough, rhinitis & sinusitis might be connected to hay-fever. I tried antihistamines with no improvement. In the summer of 2009, I noticed that my finger and toenails had become white and then gradually darkened to yellow. My GP referred me to a dermatologist who didn’t know what was wrong so she called in a colleague who asked me if I had a cough, sinusitis etc. She also noticed that I had lympheodema in my ankles and then told me I had YNS. They took nail clippings and photographed fingers & toes and prescribed 6 weeks of Itraconazole. I went back after two month & the consultant ordered a CT scan for my chest and prescribed more Itraconazole and support stockings to try and stop my ankles swelling too much. The CT scan showed Bronchiectasis in both lungs – mainly in the right. She then discharged me and told me to take antibiotics – Amoxycillin 500mg every time I got sinusitis or a chest infection and Itraconazole when my nails become really discoloured (brown at times).
I now just see my GP for my meds and although I cough day and night and I’m breathless on exertion, I think I’m doing OK. I take 800mg vitamin E each day which does help the nails – both the colour and helps them stop detaching. My big toe nails became really thick and clawed and were getting infections under the nail so I had them removed and the nail bed destroyed to prevent further infections.
I have read of cases where people developed thyroid problems along with YNS. I suddenly developed hypothyroidism in August 2010 but didn’t link it until recently.
I had read the same article about titanium maybe being implicated with YNS but as I don’t really have much in the way of this in my dental regime, I discussed it with my dentist & decided to leave well alone. I wonder if there are any more of us?
Katie R
I was diagnosed with YNS at the age of 57 years in November 2009 after a year when my GP suspected my constant cough, rhinitis & sinusitis might be connected to hay-fever. I tried antihistamines with no improvement. In the summer of 2009, I noticed that my finger and toenails had become white and then gradually darkened to yellow. My GP referred me to a dermatologist who didn’t know what was wrong so she called in a colleague who asked me if I had a cough, sinusitis etc. She also noticed that I had lympheodema in my ankles and then told me I had YNS. They took nail clippings and photographed fingers & toes and prescribed 6 weeks of Itraconazole. I went back after two month & the consultant ordered a CT scan for my chest and prescribed more Itraconazole and support stockings to try and stop my ankles swelling too much. The CT scan showed Bronchiectasis in both lungs – mainly in the right. She then discharged me and told me to take antibiotics – Amoxycillin 500mg every time I got sinusitis or a chest infection and Itraconazole when my nails become really discoloured (brown at times).
I now just see my GP for my meds and although I cough day and night and I’m breathless on exertion, I think I’m doing OK. I take 800mg vitamin E each day which does help the nails – both the colour and helps them stop detaching. My big toe nails became really thick and clawed and were getting infections under the nail so I had them removed and the nail bed destroyed to prevent further infections.
I have read of cases where people developed thyroid problems along with YNS. I suddenly developed hypothyroidism in August 2010 but didn’t link it until recently.
I had read the same article about titanium maybe being implicated with YNS but as I don’t really have much in the way of this in my dental regime, I discussed it with my dentist & decided to leave well alone. I wonder if there are any more of us?
Katie R
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