This is a photo of the middle finger of my right hand. Very slowly a hard piece is being exposed. Personally I don't think it is bone, rather a huge lump of granuloma although it is very hard to tell. I have feeling in all of my fingers except the tip of this one. Any comments appreciated.
Lesley
Lesleyg,
I think you are right, it doesn't look typically bony but it's difficult to tell from photos.
Reading your comment on the other thread I am astounded that your Dermatologist hasn't organised dressings for your fingers, apart from anything else the risk of infection must be pretty high. I am not sure what the time lapse is but can you get to your GP surgery today to get something sorted. They will be able to do individual finger dressings so your whole hand won't need to be bandaged together.
The whole thing sounds absolutely awful, I get a sense from your posts that your care isn't what it should be!
I hope you manage to get a break from the pain sometime soon.
Actually reading the other posts I have to agree regarding care. I was sent home from hospital with no plan except to see the dermatologist mid February. Even though it is a nice private hospital that I was in recently, it is a long way from home to go back in there straight away (they told me I could).
It is a public holiday here until Tuesday so will battle on until then and get onto either the GP for the dermatologist.
Thanks Lesley
Hi Lesley
You have my deep sympathy - this really must be aweful for you, and so painful
I wonder if your Australian drs would consider discussing things with their international colleagues? I know they asked you to ask for views on the site so do seem keen for imput. There is an international society for doctors who are researching Behcets. They are always keen to learn more about the disease so would find your lesions interesting ( not interesting for you I know, just a pain) and might have some ideas on treatment and care.
Weblink is
Maybe they could contact Professor Fortune at the London Behcet Centre of Excellence as a good starting point (or maybe choose a dematologist) ?She is a very helpful person. I think it best to do this dr to dr - they seem to like that.
Kind regards,
Sian
Thanks Sian
Yes I would definitely be interested in other opinions. Hoping to get onto some more help this coming week.
Lesley
Good Lesley. As a minimum, and on a very practical level, ( I am a nurse so very practical! ) getting your fingers dressed will make a difference. There are all sorts of wonderful products on the market now that will really help the tissue to granulate.
Sian has come up with a wonderful suggestion to deal with the " big " wider issue. I despair of the medical profession sometimes and their unwillingness to accept the boundaries of their own knowledge and seek expert opinion from elsewhere.
Thanks J guessed you were a nurse, it surprises me how many nurses there are on this forum! It is now 1130pm on .sunday so will try and get some sleep (aided by painkillers)
Cheers Lesley
Just a quick thought Lesley. If it's vascular problems causing the ulcers/ lesions on your fingers have your Dr's ever thought of anything like Iloprost infusions?
I have seen them used post vascular surgery to open up the arteries etc and improve blood supply. I know they use them to treat Lupus patients as well.
Hi Keyes
I haven't had that one mentioned. The main one being considered at the moment is tocilizumab - probably one 800mg infusion every three months.
Thanks everyone for your input, will let you know how I get on.
Lesley
Hi Lesley I do hope you got back to the specalists today. I know you are on a few medies and to be honest I'd hate to see a nasty infection get in. Please let us know how you get on. Xx
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