Welcome to Cleveland!

Hello all! I have tried to respond to messages today, but this is always the easiest way to answer everyone's questions and keep you updated :) I will try to answer all of the questions I've gotten too. My mom and I came to the Cleveland Clinic yesterday for an appointment with Dr. Boissy, an incredible neurologist here. I had a pretty bad relapse recently with a lot of spine pain, leg weakness, a foot drop (and tripping on that foot) and just a lot of weird neurological symptoms. Because the relapses have gotten worse in nature, it was time to see a specialist in neurology. I was going to go back to Mayo, my "usual," but we found Dr. Boissy and she is the best in her field, and when I saw her cute picture I just felt like she was the one. The current issues that I am facing are neurological and from the waist down, mostly affecting my legs and feet. I cannot lift my toes, walk on my heels, and have different sensations on my legs than I do my arms.

The difficult thing about the neurological symptoms is trying to differentiate them from Ehlers Danlos or POTS symptoms. And try to see what is related and what is not. We are still sorting that out, but Dr. Boissy was a huge help. She spent two hours with me taking a ton of notes and making a plan. Unfortunately, the way the insurance system works, these tests need 5 days to be pre-approved. I chose to go home and not wait 5 days in a hotel room in a city far away. So I am going home tomorrow, will do the testing in Greenville, and send them all to Dr. Boissy. Once she reviews them and gets a good idea of what the next step is, I can come back. She also wanted me to see the POTS and EDS docs here to get their opinion on things, but there is only one doctor for each of those (since they are so specialized), and of course they aren't in the clinic Mon-Wed. So again, I didn't want to wait around and hope to get in later in the week.

For those who have asked about Greenville doctors.... they are amazing. I love them all and they are good at what they do. But POTS and EDS aren't common, and for most of the doctors I am their only patient with those. When I come to Cleveland Clinic or Mayo, they see hundreds of patients with these illnesses and have much more experience with them. My docs at home always tell me when things get worse to go elsewhere, just because they are not equipped to treat me as much as the clinics are. Plus at home, I have to wait weeks or months in between appointments just to get in to each area. For Ehlers Danlos, I see rheumatology and vascular, and for POTS I see neurology and cardiology. Lots of specialties and each one only treats their own area. The clinics can look more comprehensively at my whole self and what is affecting what. Hope all of that makes sense :)

I feel extremely blessed that my parents help get me to the best possible places to help me and that I have so much support from my husband, family, and friends. I wouldn't be able to keep such a positive attitude without them. My mom has the hardest job taking me to these places and watching me in pain. A mama doesn't like to see her baby sick! Although I have been in constant pain, I still feel a peace that passes all understanding.