Why are there no medical specialists in connective tissue when it is what holds us together?
This burning question for EDS/HSD Awareness Month brought to you as part of Linda’s One-Liner Wednesday. Join us! Find out more here: https://lindaghill.com/2025/05/21/one-liner-wednesday-600/
I’ve posted variously over the last year about some health problems I’ve been having with a puzzling combination of symptoms, including left-side tinnitus and visual blurring, balance problems, fatigue, brain fog, and left shoulder/neck pain and stiffness.
I’ve been accruing specialists over the last year as we ruled out diagnoses for various body parts but I have always felt that my symptoms were connected because they developed in the same timeframe and seemed to interact with each other. I also, for family history reasons, suspected that there was an underlying connective tissue disorder.
Over the last few weeks, we’ve made some progress on the diagnostic front. I’ve finally been diagnosed with cervical instability, which, when not caused by trauma or Down’s syndrome, is often associated with connective tissue disorders like hypermobility spectrum disorder.
I also had a CT angiogram which resulted in a diagnosis of fibromuscular dysplasia in both internal carotid arteries. This is caused by a problem with the connective tissue within the blood vessel walls. There’s a likelihood that it is affecting other blood vessels, which may be behind some other symptoms in far-flung parts of my body.
At this point, I need to go to a major medical center for further evaluation and, I hope, some relief from symptoms. FMD is not able to be treated directly but there may be some treatments that will improve bloodflow and reduce risk of complications. Fortunately, a college friend who is on the faculty at Columbia University medical school in New York City was able to connect me with their neurology department and I will have a visit there later this month. A team approach is often needed for FMD – and connective tissue disorders, in general – so I may well wind up with a medical team in NYC which will interface with my team here at home.
Thanks to all of you who have been following along on this medical journey and sending me your well wishes and support. I’m likely to be continuing my rather sporadic posting as symptoms allow. For example, the angiogram caused some unforeseen aftereffects that knocked me out for several days and I’m still more limited than I was in terms of energy and clarity. I appreciate your continuing patience with me as I navigate this uncertain time.
Many thanks to all those who have been keeping my mom, known here as Nana, in their thoughts and prayers as she has been in New York City for an aortic valve replacement.
I am happy to report that she is on her way home! As often happens with heart procedures, while the TAVR procedure went well, one thing led to another. First, there needed to be a temporary pacemaker, which then needed to be replaced with a permanent one. She developed a bit of a-fib, which required some new meds and a re-jiggering of blood pressure meds. The next things we knew, what we had thought might be a three day hospital stay turned into eight.
We are happy that she is doing well and looking forward to having her back in town. She will need to rest and has a program to start exercising to get her back to her usual activity schedule, but she is doing so, so, so much better than when she was having congestive heart failure symptoms.
We are very grateful to the medical team that made it possible. I am also very grateful to my sisters and their husbands who have been on hand down in NYC to help both Nana and Paco at this stressful time.
Here’s to hearts that are healing!
Joanne Corey 