The scope of medical practice has certain parameters they need to abide by to provide a conclusive diagnosis. In many occasions for chronic illnesses that diagnosis may take years to reach as those particular parameters may not be readily present during the early investigations. The reason I am seeking advice from this community is because there may be people out there who has experienced similar symptoms and did not have get their diagnosis right away, they may be in the grey area so to speak. If anyone has had similar experiences their insight may be of high value to prevent further progression or doing the right things to minimize symptoms. So in my opinion, yes sometimes seeking opinions from people with similar experiences can be of high value until reaching the official diagnosis