@oldkarl

Whenever I feel like I have it bad, spending a little time here on Connect reminds me that I'm a wuss. I can't imagine how people survive with so much pain. We humans are a diverse bit of God's creation, with diverse mechanisms of dealing with life.

Jim

dear oldkart. and jimhd yes i also have both rheumatoid and psoriatic arthritis. somehow it is soothing to know there is another person out there that i can share my pain with. persons who also are going through the same pains. i thank the mayo clinic clinic for having this site. it really helps me and i am sure others as well. thank you mayo.

@peach414144 Peachy, one very difficult problem we all share on this site is to have patience. I learned the very hard way that two things overweigh everything else. First, that our disorders are very, very tricky issues. I laugh that I have been diagnosed with over two hundred different disorders and diseases, and most of there were accurate! I have well over 200 elements in my dX work, and learn some new stuff almost every day. Just yesterday I learned that Chronic Bronchiectasis, which I was diagnosed with several years ago, is a Sign of Amyloidosis, hATTRwt and some other Amyloidoses. Then, also, I had to remember that most of the doctors we see at Mayo, although they may have practiced medicine for decades, are just advanced med students, who we must train accordingly. They are mostly looking at new stuff, at least new to them, so patience is necessary. The word "expert" is a very relative and subjective term. When the group at Phoenix told me they had no indication that I had Amy, it was simply because they did not recognize that nearly everything they looked at was a sign of Amy. They were too new at the Amy business. After all, they might see only one AL or hATTRwt patient in a lifetime of practice, and most of them could not even spell the word.

dear oldkarl. you are so right. we the patients must be the patient ones and teach the new doctors. i think there should be some sort of setup where the older more experienced doctors should bring the younger doctors up to par. DEAR OLDER DOCTORS; WHY ARE WE NOT PROGRESSING IN THE MEDICAL FIELD? (at least in this area? sincerely a patient.

@oldkarl @parus @peach414144 et al.

I may be one of the lucky ones who have a good doctor who knows his limits, actually listens, and refers me to the right specialist. At my last appointment, I told him that it's a big deal for me that before he walks out of the exam room, he asks if there's anything else I want to talk about. The specialists I've seen have, for the most part, been attentive and proactive. I'm afraid that when my pcp retires, I'll have a hard time finding one as good as he is.

Jim

@jimhd Jim, I also have some good doctors who treat me well and listen - it is a blessing, isn't it?

Teresa

@jimhd I agree Jim. I get inspired reading the stories about people who have contended with so much in their life.

Teresa