so today we saw the electrophysiologist. It was a very productive appointment. He’s starting me on Floren f. It’s a medication to help retain salt and water to help with the blood pressure. He also wants me to see an Ehlers Danlos syndrome specialist. He’s taking labs in like 3 weeks to check my electrolyte levels. i have to try the dose I’m starting on for a month, and if that doesn’t work, then we will raise the dose. Then we give that another month to see if it works. If it doesn’t, then we either try a med called Midadrine or do a tilt table test. I’m going back to see him in three months. He said the ED played a part in this. He said I most likely had POTS. He doesn’t know why I’m going to a neurologist. I now have to find an EDS specialist who takes Medicaid. Let the hunt begin!!! oh boy. Ray
Just because you don’t look sick nesn’t mean you aren’t. Stay strong!! You got this!!
So, my primary care provider told me today that I most likely have Ehlers-Danlos syndrome hypermobility type which is a connective tissue disorder that affects the skin and that it is translucent and stretchy, but it also affects the joints because they are hyper mobile and move in ways they shouldn’t causing frequent subluxation and sprains. This along with pots makes for a very difficult time. These are both chronic illnesses. Looking for support in anyway I can get it.