We are still on the hunt for a sure diagnosis for what is causing my numbness and weakness episodes. There are many "theories" of what could be causing it but no test to confirm for sure on some of them or the test that would show doesn't show positive results to conclude that is the cause. One Dr thinks it's because of all the trauma to my body that occurred when my second kidney stone blew a hole in my kidney causing urine to leak into my abdomen for several weeks. Another thinks that something happened in my brain to cause the numbness and something totally different is causing the weakness episodes but she isn't sure exactly what. Nothing showed up in my initial brain scan but that can happen and the damage can show up later. But she doesn't want to re-scan unless I get more severe symptoms to cause the need for another scan so we aren't for sure about that as of right now. Another Dr thinks it is caused by the MCAS I was recently diagnosed with. Another Dr thinks it is caused by my EDS. And it could also have been an arterial dissection that caused it that has healed by now so the test they did to confirm was inconclusive.
When I got the test to see if I had any arterial dissections, they did find something else troubling though. I found out 2 weeks ago that I have an aneurysm in my left corotid artery right under the base of my skull next to my brain. There is also another possible aneurysm but when I go to the surgeon I am hoping to receive an answer as to exactly what it is. I go to the Vascular Surgeon in 2 days. I am anxious to find out if and when they will do surgery and what this means for the rest of my life. Aneurysm's are common in EDS and this finding is causing more concern that I have Vascular EDS which is the most severe form of EDS. There is much to take in lately with all of my new diagnosis I have received. And still a lot of unknowns. I hope I receive answers some day soon. The hardest part is that nothing they have diagnosed me with has a cure. I have to live with it all the rest of my life. Some of the them have treatments that lessen the symptoms but there is no way to make it go completely away. They may be able to fix my aneurysm, but I could always get another one at anytime.
It is strange knowing that almost every time you go to the Dr you will be diagnosed with something new, something they can't do anything about, and something that is severe. I never understood how serious EDS was until recently. It has been nice having an online group of fellow EDSers to talk to, get together with and gain resources from. It has helped knowing there are others going through a similar fight. I am truly grateful for all the support and love I have received from family and dear friends throughout my journey. People are amazing.
