Good doctor in Sydney?
Posted 31 August 2011 - 06:24 PM
I haven't been diagnosed with scleroderma (yet?) but I have an Anti nuclear antibody reading of 1:2560 which I'm told is very high and I've had Raynauds for 5 years or more. A rash started on the soles of both my feet at the beginning of May and I've tried everything I can think of to fix it - its now thick, cracked and hard, making walking very difficult. I've been to several general practitioner's and an immunologist and have used many tubes of steroid creams plus jars and jars of moisturisers. Now it's started on my hands - grrr! I'm going to an acupuncturist today to see if that will help.
I think I might also have some heart involvement as a stress echo test showed unusual results, so they suggested an angiogram, which showed my heart and arteries were okay but the muscle walls were going into spasm? The cardiologist said it was out of his area of expertise but he ordered the ANA test anyway. The immunologist thought the rash on my feet was dermatitis, which I've never had before and it doesn't seem to be responding even though I'm doing all that she suggested. If anybody has any suggestions for easing the skin on. my feet and or preventing it from getting worse on my hands I'd really appreciate it.
Many thanks for this forum, I don't know where else to turn
Posted 01 September 2011 - 06:20 AM
Welcome to these forums!
I'm sorry to hear that you've been having worrying problems with your skin and possible Cardiac involvement. However, it is quite possible to have positive blood tests and yet not develop Scleroderma and vice versa as many of our members can testify.
I've included a link for Scleroderma specialists in Australia; unfortunately none of them are in Sydney. However, our Australian Support Specialist, Robyn Sims, may be able to give you more information about Sclero experts in Sydney.
I'm afraid I have no medical training so can't advise you as to whether your skin problem on your feet and hands is Scleroderma, but I've also included a link to Dermatitis which does include ideas to manage this very irritating skin condition and hope that they will be of help to you.
I'm very glad that you've found our forums and am looking forward to reading more of your posts and getting to know you.
ISN Assistant Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 01 September 2011 - 07:13 AM
I also have no medical training but I have had dermatitis off and on for years. I've also had a case of what my dermatologist called Moccasin Fungus and Gardener's Hand. (Don't you love these scientific names?) Anyhow, the Moccasin Fungus sounds a lot like what you describe on your feet. It only affects the area where a moccasin would touch: soles and sides. It took quite a while to clear mine up using a pretty strong combo of anti-fungal cream, steroid cream and twice daily application of a cream that caused the skin to exfoliate faster than usual. The Gardener's Hand is what it sounds like - also a fungus. Now in rare cases, a person will also have an allergic reaction to the fungus. I am not only rare, I'm special!
So two suggestions: ask your dermatologist about a possible fungus infection (my doctor did skin scrapings). The 2nd suggestion comes from the dermatology department at the Center of Excellence where I am treated for the scleroderma. In cases of dermatitis, they advise a 'soak it and seal' practice. Instead of avoiding water at all costs, you soak the area (to hydrate it as much as possible) and then seal it with a good heavy cream (no color or fragrance, of course). I think if you google the phrase, you will find more details.
I hope you find some relief for the skin problems. They can really drive a person crazy!
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 01 September 2011 - 08:13 AM
I want to take this opportunity to welcome you as well.
Like Jeannie, I was taken with your username as well
I'm hopeful you will receive answers soon. It can be miserable having to deal with
problem feet, yet in your case, it is a real challenge for you.
Once diagnosed, it will give you alot of relief, no doubt: with treatment, it will
Keeping you in my thoughts and sending over Soft s to help in the meantime.
Posted 01 September 2011 - 01:29 PM
Absolutely! Welcome to the forums! I have cardiac involvement, diagnosed in 2010 with myocardial fibrosis and heart failure, and have been amazed to find out how common it can be in people with diffuse scleroderma. In fact did you know that one of the first symptoms described by diffuse scleroderma patients is heart irregularities and symptoms can include arrythmias, pericardial effusion and my personal favourite heart failure.
I have negative blood work (ANA, SCL-70) and scleroderma which is why scleroderma is best diagnosed using a combination of clinical symptoms, test results (ECHO, LFT) ad blood work. If you aren't seeing a scleroderma specialist you may want to consider doing so for this very reason.
I have major feet problems including foot ulcers and foot problems are a real misery, the more you stand/walk the worse the pain gets and let's face it you can't avoid your feet hitting the floor!
Take care and keep posting.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 03 September 2011 - 09:36 AM
Welcome to Sclero Forums!
I may be wrong (I often am!) and please keep in mind that I have no medical training at all. It appears to me, from your very brief description, that you might have two separate issues here, one being possible scleroderma and another being a dermatitis-sort of thing probably unrelated to any scleroderma issue because it does not sound like any sort of usual scleroderma skin involvement but does sound an awful lot like dermatitis (or as Jeannie pointed out, a possible fungus).
So I'd say you'd want to approach the items separately. Don't go to the scleroderma specialist over the dermatitis/whatever concerns, but do go because of the blood work, Raynaud's, and possible cardiac issues. They can screen you, do baseline testing, etc. At the same time, continue to follow up with your dermatologist and perhaps have additional scrapings, biopsies, treatments, etc. to get that under control.
Remember, it's not unusual (at all) for people who have scleroderma to develop totally unrelated problems -- sometimes even many of them. It's also possible to show up with positive blood work and a few symptoms yet never progress to a full-blown diagnosable case of scleroderma. Only time will tell what you're dealing with and there's no way to rush the process.
Meanwhile here are some warm hugs, just for you.
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 05 September 2011 - 02:56 AM
Sorry to hear about your illness.
I thought I would say a hello as I also live in Sydney and have no sclero specialist. I do however have a rheumatologist who has many patients with odd things.
I see her out of St Vincents Hospital Clinic in Darlinghurst. I see her as my hands are typical Raynauds/thickened wrists, but I also have muscle problems that indicate possible polymyositis/or dermatomyositis? But the jury is still out on what they are calling it other than mixed connective tissue disease. I also have autoimmune hepatitis and it was the liver specialist that started checking out the bigger picture and put me in hospital. (I have also seen a cardiologist and neurologist!).
But what I wanted to say was keep questioning the diagnosis and don't be afraid to get second/third opinions. Ask for another specialist. If you are uncomfortable then you need some answers. If I had listened to the first specialist I probably would be in a wheelchair.
Sorry not much help but definitely a BIG hello and sending you lots of strength.