Chronicle VIII: My Chronic Illness Travels

It’s a been some time since I last posted on here – sorry all! The last couple of months have been non-stop.

As mentioned in one of my previous posts, I was going to be sent out of state for further autonomic testing. Well, last week I traveled to Virginia to a Dysautonomia Specialist to be further evaluated. I spent five days getting a series of tests done to see how much POTS has affected my body and to look for potential causes. I gave 15 vials of blood, had an Echocardiogram done, an ECG, an orthostatic test, a neurocognitive test, a nerve conduction study, a breathing test, a stress test, an ultrasound, a CT Angiogram and another tilt table test. The doctor I saw was very thorough and said that he will do his very best to help me. Praying hard this is the case!

One of the significant findings he mentioned was that I may have something called “Nutcracker Syndrome” and compression of my celiac artery due to what he saw on my ultrasound images. These are considered “co-morbidities” of POTS. Here is a brief summary of Nutcracker Syndrome if you’re interested in reading up about it: https://www.mayoclinicproceedings.org/article/S0025-6196(11)60346-7/abstract

I am still trying to understand this phenomenon myself, but basically, it is compression of my left renal vein which can cause various symptoms including abdomen/pelvic pain and orthostatic intolerance. If this is the case, it could explain a lot of my symptoms. The CT Angiogram he sent me for was done specifically to look for this. If the scan shows vascular compression, the next step would be to have surgery to rectify it.

In addition, I was diagnosed with hyper-mobility syndrome – also known as “Ehlers-Danlos Syndrome.” Ehlers-Danlos is a genetic connective tissue disorder and it’s something you are born with. Here’s some information about Ehlers-Danlos: https://www.ehlers-danlos.com/what-is-eds/

He explained that having Ehlers-Danlos makes you more susceptible to developing POTS in your lifetime, but POTS is usually triggered by something else. In my case, he believes there could be an autoimmune cause, but “said” autoimmune disease has not yet been identified.

I have to return on June 26th and stay for an additional two days to go over the results of the tests I had done that have not yet come in. I am extremely overwhelmed, scared, but also hopeful. I am praying that this is the beginning of a new chapter for me when it comes to my POTS and praying that whatever comes of all of this testing, it is something that can be properly managed. I would give anything to feel just 30% like my normal self again.

Below are some pictures I took while in route to VA and while I was in between testing last week. I will do my best to update on here as more information trickles in.

As always, thank you for taking the time to read this post!

On the way to VA. Here’s to hoping for clearer skies ahead!
My Mom picked me up from the airport and stayed with me the whole week. It helped a whole lot to have her with me ❤

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