Hello everyone! Today I had my appointment with my autonomic specialist to go over the results of all those test I had done last month! I absolutely love this doctor! He’s thorough and explains things really well.
My Level 3 cardiopulmonary stress test showed that I have low filling pressures and output. This means that when the heart fills with blood there’s supposed to be a certain amount of pressure to propel it out and to the rest of the body. My pressures are too low, and drop even lower (more than 60%) during exercise. This leads to low blood volume and causes all the symptoms. It’s consistent with veinous insufficiency. To try to treat this we are going to try really low doses of a few meds I’ve tried in the past (there’s only a handful of drugs out there to help this issue). The goal is to get to an effective therapeutic dose without causing any major side effects. We’re starting with a really low dose of Florinef, and will check in with the doctor in a week to see how things are going. If there isn’t much improvement we may try a super low dose of Mestinon, and the third drug to try is Midodrine. We have to be really careful because my Diastolic (bottom number) blood pressure is high whereas my Systolic (top number) is on the low-normal end. We don’t want to cause any hypertension.
The next thing is that my skin biopsy to look for small fiber neuropathy showed severe neuropathy. I’m in the <1% which means that my nerve fibers were barely detectable, which is really interesting since my last skin biopsy 3 years ago was normal. This absolutely suggests an autoimmune type autonomic disease. We’re going to do a second skin biopsy to test specifically for autoimmune reaction against the nerve fibers. If this is positive, which we are hoping for, I can start IVIG treatments to hopefully reverse the damage. My dr said that he has about 20 patients that present like I do and one in particular had improved so much that she is now able to be off of most of her meds! Granted, I will still be one a certain amount of medication because of the EDS related symptoms, but we’re hoping things will improve enough so that my GI motility improves and my energy levels improve so that I can start walking and being more active. I feel really hopeful about all this!