Thanks so sorry you had this journey too. They have seen ID and they and other departments looked into things. The trouble has been there is no talking to one another especially in the same room. I think my daughters and I would have loved to have a meeting with all the docs to discuss everything. This has never happened and those days of medicine are far far gone. I and they wouldn't mind hearing an argument even! It would be invaluable to hear the different ways of thinking and seeing a multilayered problem like this. In other words a tumor conference type of approach or maybe a mini grand rounds!!!! Why can't patients be involved in the evolving story of their illness?Some department folks were better than others. No one was evil or bad. I think it was hard for everyone administration included.
When I worked in the hospital there was a md/phd student who had complaints of heart issues. They couldn't find anything and said it was all in his head. A week or so after that brilliant assessment he falls down dead of a cardiac arrest!
What I think we are looking for is affirmation that new eyes need to see them both ( which we have gotten thanks you all!)and what would be the best place because it does mean other specialties like ID. Rheum has been involved. And we are going into a whole different discussion with that because with inflammation there can be ebbs and flows so that blood work like with P acnes can look good but not be the end all and be all.
How will they know for you? Is it blood work? Are you still in pain?
When I worked in the hospital there was a md/phd student who had complaints of heart issues. They couldn't find anything and said it was all in his head. A week or so after that brilliant assessment he falls down dead of a cardiac arrest!
What I think we are looking for is affirmation that new eyes need to see them both ( which we have gotten thanks you all!)and what would be the best place because it does mean other specialties like ID. Rheum has been involved. And we are going into a whole different discussion with that because with inflammation there can be ebbs and flows so that blood work like with P acnes can look good but not be the end all and be all.
How will they know for you? Is it blood work? Are you still in pain?
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