Drs. in Baltimore familiar with EDS

Written by: Amanda Henderson, June 23, 2016

On May 25, 2016, Dr. Clair Francomano confirmed POTS symptoms and Mast Cell issues without having to do needless testing (because they are so common with EDS), and is providing treatment for those issues. I do have a LOT of GI problems, and have had little help over the years, though I've tried so many different things on my own. I'd been on the FODMAPS diet for a few years, which helped, but wasn't perfect. I also eliminated gluten, and most lactose. Now, I've begun a low histamine diet (not fun), and added Cromolyn Sodium to my routine. Dr. Francomano ordered an echocardiogram that revealed Mitral Valve Prolapse and an enlarged left ventricle, which is common in EDS. I'd had a high heart rate (100+) for several years and varied blood pressure, but it's actually been doing a little better since I stopped taking Savella and BC pills- go figure. She also ordered a sleep study because of the debilitating fatigue, and wants me to have hormones tested to get them straightened out, if needed. She was curious about my answers on her tethered cord survey, and Dr Henderson confirmed that I have a 90% chance of having it. I'll have a urodynamics study to determine 100% accuracy on that diagnosis. He also found in my lumbar MRI that I'm missing a few parts around the spine. He named them, but I can't tell you what they are... big technical terms. He believes I have possible mild spina bifida (to be confirmed with surgery), which causes the tethered cord (occult tethered cord means difficult or impossible to see on imaging and must be diagnosed and treated with symptomology), which all lends to EDS. He's performed many surgeries to release tethered cord for EDS patients, and so believes it all works together. My legs are very weak and the muscles very tight and all is very painful- it starts from my sacroiliac joint, spreads to my hips, and on down. (An SI joint stabilizer from Baurfeind is quite helpful.) I use a wheeled walker to walk very far, because they weaken further upon use. (Although it doesn't help my poor neck- lol!) His other concern that he always checks EDS patients who have neck issues for, are Chiari Malformation and cranio-cervical instability. I have the CCI, but not the Chiari- and I have moderate degeneration from trauma. He can also refer to other Drs for the surgeries, as needed, but mostly on the east coast- definitely not in the midwest, where I'm at. He believes connective tissue disorders are much more common, but extremely under diagnosed, and was surprised that Mayo Clinic (etc) was of so little help to me.

It's all a little overwhelming, but they were so familiar with EDS that it felt comfortable to be in a Dr office for the first time in so very long. They recognized things in me that are features of EDS. I have a high, narrow palette and piezogenic papule on my heels. I also have a tendency to lose my balance when I hold my hands forward, put my feet together, and close my eyes- it's called a positive on the Romberg test, which means my proprioception is off due to spinal cord malfunction. My fingers are floppy and ring splints were suggested. Who knew? I chalked it all up to normalcy- for me, anyway.

It's great to be home and back into my routine- I found my body reacts much better to a regular schedule and familiar procedures. The low histamine diet is very restrictive, so it's a pain, but it seems to be working well- I've been able to stop taking omeprazole for the first time in 15 years. That could be due to adding the Cromolyn Sodium, as well.

Physical Therapy for strengthening muscles is too much for me right now, but I have some leads on what might be a better approach for EDS, so I'll look into it once some of the tests and Dr visits are out of the way.

Ever onward and upward, we'll see what happens next.....