Gloria:

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I'm not sure if this will help or further confuse you. I just returned from seeing Prof S. He treated both of my feet as they were at stage 2. He did not treat my hands - stage n. I do have several small nodules and chords although they are not really visible. I also have the symptoms in my hands that are associated with active disease - sensitivity, and sort of a bruised sensation with overuse and a slight soreness in the area of the nodules. I asked him why he was not treating them at this time and he said it's better to observe as they are in the early stage of disease. When I go back for my second round of RT for my feet he will check my hands again. He will know then if the DD has increased (and at what speed), or remains the same. He didn't seem concerned that it would attack me overnight. It's possible that they will not progress and RT can be avoided. Like others on this site have suggested. Pay attention to your body and watch for changes. There's doesn't appear to be an exact map for how it behaves.

kate:

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Thanks, coogeematt for your so detailed email. I am going to ask my doctor for the refferal to the prof. Jackson and I have got exactly the same questions as you do. Does he know when it is the right time to do RT, not too early not too late? I think the doctor should determine it, not the patient. Would it be possible to ask him to contact German professor as an administrator spanishbudda on this thread suggested? What do you think?

coogeemat, I am 63 y.o., I have just found a small nodule on my right hand 10 days ago and seen only a GP, who sent me for an US, because he thought it was a ganglion( a cyst). He has given me a referral to a Hand surgeon in St. Leonards,( GP said this doctor is very good) and the appointment I have made with him was going to be in two weeks time. I do not know anybody in my family who had this disease .

Coogeematt:

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Gloria:

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I'm not sure if this will help or further confuse you. I just returned from seeing Prof S. He treated both of my feet as they were at stage 2. He did not treat my hands - stage n. I do have several small nodules and chords although they are not really visible. I also have the symptoms in my hands that are associated with active disease - sensitivity, and sort of a bruised sensation with overuse and a slight soreness in the area of the nodules. I asked him why he was not treating them at this time and he said it's better to observe as they are in the early stage of disease. When I go back for my second round of RT for my feet he will check my hands again. He will know then if the DD has increased (and at what speed), or remains the same. He didn't seem concerned that it would attack me overnight. It's possible that they will not progress and RT can be avoided. Like others on this site have suggested. Pay attention to your body and watch for changes. There's doesn't appear to be an exact map for how it behaves.

Hi Gloria and Kate and Spanishbuddah,
Just here we some contradicting a lines of thought coming. Gloria states that Prof.S suggested to you to wait before rt on hands even though the nodules appear in active stage. And SpanishB suggests that Prof.S recommends that active stage is best time for RT.
Again here is the subjectivity of defining, labelling, quantifying what is what stage within "the early stage" .

Hi Matt,

Please let us know the outcome of your meeting with Jackson. I sent him a photo of my right hand with a nodule on my little finger, and he said it was too early to have RT. I would very much like to know what he advises you.

Cheers
Julie