Squeek (Re )

[Guest guest]

Hi Squeek,

I feel awful for not updating the group sooner and letting you know what happened at s first rheumy appt on Saturday. You all made me feel so much at home and responded to my many questions, I know I should have sat down much sooner to write.

The appt went well, the specialist was pretty thorough and dh and myself left her rooms feeling fairly confident that she would be able to help our little boy. I have no idea if she knows of RP, it wasnt mentioned by either the specialist or myself. I judged once we had sat down and began talking, that it would be best to give her the opportunity to make her own diagnosis before I bought up my own suspicions. I reminded myself I was there to hear a specialists views and not push my own, so for the first appt at least I was not going to bring up RP unless she did herself. I think sometimes you just know when its best to be cautious with a new dr! Its also a little harder when you are advocating for another person and not yourself. Interestingly, she suggested Behcets syndrome, which I had not heard of but since have been told (by Diane!) that this disease and RP often mirror eachother in some respects. We have another appt with the rheumy in 3 weeks. By that time she will have been able to gather all past pathology reports from previous labwork done by other drs (the immuno, GI, renal surgeon, neuro etc) and reviewed them to give her a better understanding of what they have uncovered so far-- for instance subclinical hypothyroidism, elevated blood sugar levels, elevated lipase and amylase, the pid, neutropenia etc.

I really appreciate your taking the time to ask how things went! This is such a caring and loving group of people here, which I am reminded of each time I read the group posts. Take care everyone,