Our exchanges through this website has been very informative. We now know that there are a number of significant symptoms that go beyond the BD symptoms that we read of in medical journals and websites.
But the challenge is: many of our doctors do not know of these other symptoms. In my case, i try to inform my doctors, but i feel that my efforts are not successful because:
1. My experience could be an isolated case; numbers make a big difference.
2. my doctors seem to want to focus on the clinical ( and admittedly very important aspect) - for example, as long as my uveitis does not flare up, and brain scan is negative, all is considered well with my world - even if I have brain fog, pains and constant headaches
3. Because of point 2 and because of time constraints, i end up not telling doctors of my other "lesser" symptoms
Maybe we can ask the webmaster of this site to open a public section, wherein they post the commonly experienced BD symptoms but which are not yet being recognised in medical literature?
If you like this idea, any suggestions on how we compile the symptoms?