Thanks for the information Stefan. I just have nodules at this point. One in the PIP of my right 5th finger noticed one year ago, and I think a few in each palm based on my own checks recently. My 4th and 5th fingers on both hands don't extend as much as the others but they can still raise slightly off the table and they don't have any fixed curl, but when relaxed they do curl more than the others, but I can straighten them. Some pain at times in the PIP nodule area. My palms burn at times when I am highly stressed so don't know if that's connected to the disease or to my worries as I have experienced pain from purely psychosomatic stress before.

I was told the steroid shot was not appropriate by the doctor's nurse today, but that she would examine me for the other nodules tomorrow. I hope to get an ultrasound or some less subjective proof that can help pave the way for RT somewhere. I am terrified it will progress before I can get RT and will require even more money and have less chance of success. I missed the treatable windows on two other issues in the past and am in constant pain and disability as a result. I think 3-4 months would be the soonest I could possible get to Hamburg or one of the other clinics. Do you think that's soon enough?

Would you be able to estimate a daily accommodation/food/local transport cost for Hamburg for example? I haven't been to Germany for many years and am out of touch with prices. I can't manage the bustle of a hostel these days but a cheap hotel is all I need and I would shop at Lidl or whatever cheapest supermarket was close and not eat out much. I'd take buses/S-Bahn/U-Bahn etc. Whether I would end up coming from the USA or having moved to Europe by then those costs would be the same...just transport there is the difference.

I figure I have LD as well based on what I read here and feel on myself. So I guess I'd have to double the treatment costs if that were true? 700 Euro or so for hands each time and 700 Euro or so for feet each time?

Edited 12/07/16 19:52

I saw my local hand surgeon again today to ask questions. Other than the clearly visible nodule in my 5th finger PIP, she thought she felt one in the palm at the middle finger below the MCPJ on the other hand...but couldn't be sure about any others and admitted it's highly subjective when they are small and without cords. I asked her about NA and RT and she said a teaching hospital far away is offering NA but RT isn't really a thing anywhere here. Locally they just do Xiaflex and surgery. She seemed up to date on the literature and had recently been to some conference and said RT wasn't even talked about and that America seems to ignore it in large at this point. She said if I could find someone who would do RT in the US she would support and refer, but realistically it would be cheaper to go to Germany all included for two trips given the costs in the US and there is nobody within even 12 hours driving that are listed as RT clinics in any case.

She didn't seem to think there was any rush given I had no contracture, and offered her personal opinion that RT was still a questionable treatment and didn't feel the evidence was there for it and didn't recommend it. It's confusing because the personal stories on this site nearly all have some reference to going early and not missing the boat but she seemed to think I had no urgent issue. I want to believe I have time, so I can reduce my stress...but I have many months before it would even MAYBE be possible. Seeing people have progression or new development even after treatment in the personal experience section is worrying me as well. Angetori is currently reporting worsening after treatment in the forum. Roger had to go back for a third time which I didn't know was possible. I thought two was the lifetime limit. Alastair had some progression after RT. Just not sure about anything at this point.

In any case I have no contact with Hamburg for some reason as per the message topic. My second message to the one address combo that worked went ignored for a week now. I intend to call them early next week I guess and see if I am not getting through or if the Doctor is on holiday or busy (most people report fast response but there is one reference to a 3 week delay due to him being abroad). I don't want to be annoying but not knowing where the problem is causes great stress as well.

I appreciate everyone's input.

Edited 12/09/16 06:58

Re growth I am not sure. The nodule in the 5th PIP that got my attention nearly a year ago and has slowly grown since then...spread ever so slightly in all directions...maybe 10% bigger than when first noticed. My hands burn and itch now but to be honest that only started after I saw the doctor and learned what Dupuytrens was and read about things here, so there is a strong chance much of that is psychosomatic as there was not a single incidence of those symptoms in the 6 months between noticing the nodule and seeing the doctor when I thought it was just some cyst or something very minor. I have experienced such flares in symptoms after various diagnoses, so I know from experience stress can cause many things. But of course you always think about the worst cause and that being active disease. I don't know if the ones in my palm are growing or not as I and the doctor are not sure how long they have been there, and my attempts to get some scans or objective proof as a reference/comparison have failed. Everything is so subjective until it's dramatically worsening it seems.

I feel trapped in the fact that as you said some people's nodules never worsen and contract. I can wait and see and possibly miss the window, or I can be aggressive and potentially waste a lot of money. No clear answer. If I can stop it or slow it down enough to get through my natural life I feel a lot of pressure to try. But the more I read the muddier it gets and the hopelessness returns. I have never really gotten over any of my pains and disabilities...they just pile up and make life that much harder...another might just crack the egg.

Edited 12/10/16 00:00

Took photos today. Tried to scan my hands as I have seen some people do but they always came out weird and squished and not really accurately representing what they look like.

The reason I was considering the steroid is the info said it can sometimes soften and reduce nodules and it was about the only thing I can do "now". The pain is intermittent and not the main reason I wanted it. I thought I heard the doctor say the injection could irritate and spread the nodule as well, but I misunderstood. She said if I wanted one just let her know but I am horrible about making decisions so I put it off for now. I just wanted to do SOMETHING to maybe slow or stop it.

Does typing and writing and other type movements exacerbate anything? I won't be using a jackhammer or rock climbing...but am afraid every time I use my hands now. Even don't want to use the vibrating electric toothbrush.

Edited 12/11/16 04:22