Thanks for responding. She had an MRI/MRA on the books but needed to cancel it due to some severe symptoms she was having which would make doing it with out anaesthesia impossible and anaesthesia is not an option; however, we are in the process of getting it pre-approved again, so will hopefully have it soon. But an unexpected and unwanted insurance change may prolong the wait, so in the mean time I’m looking for help with symptoms as it is all I can do. She is too young to not be able to enjoy life and so I seek and will continue to as long as its needed.
But I think it was miss understood when I said at the point in the road where we can look for solutions vs causes as being the end of the journey. We are no way at the end. But now we can spend some of our time working towards solutions because we have some answers vs having none before. So many conditions can come with the diagnosises she has and we will always watch for those as well as for any other root causes, but instead of being totally in the dark we now have some answers that puts us in a much better situation than before. Before each thing came with out understanding so they would blind side us and make us feel like we were starting over again and again and that no one understood or could help. Knowing what I know today puts us in a far better position to help her vs where we were a year ago. She now has a great group of doctors (we are very lucky) who are knowledgable and aware crazy stuff comes with these conditions and our goal is staying ahead of it.. We are very lucky to have an excellent knowledgable POTS specialist, but she is no miracle worker with a magic wand sadly. So in the mean time I really want to find relief for some of the awful symptoms that come with the POTS