Hi Sue, Thank you for sharing your story - that's what PatientsLikeMe is all about! Are you a member of PatientsLikeMe? You might find members of the community are able to provide advice and support for what you're going through, and exchanging experiences also benefits others. You can create a free health profile at PatientsLikeMe.com to keep track of your condition and track treatments that have worked for you. If you have any questions about getting started on the site, please let me know!