Brett Terpstra (@handle.invalid)

<picture data-title="Scrabble letters"> <noscript class="loading-lazy"> <source media="(max-width: 640px)" srcset="https://cdn3.brettterpstra.com/uploads/2025/01/diagnosis-rb.7435_tw.jpg"/> <source srcset="https://cdn3.brettterpstra.com/uploads/2025/01/diagnosis-rb.7435.webp 1x, https://cdn3.brettterpstra.com/uploads/2025/01/[email protected] 2x" type="image/webp"/> <source srcset="https://cdn3.brettterpstra.com/uploads/2025/01/diagnosis-rb.7435.jpg 1x, https://cdn3.brettterpstra.com/uploads/2025/01/[email protected] 2x"/> <img alt="Scrabble letters" class="aligncenter" data-at2x="https://cdn3.brettterpstra.com/uploads/2025/01/[email protected]" data-original="https://cdn3.brettterpstra.com/uploads/2025/01/diagnosis-rb.7435.jpg" height="226" src="https://cdn3.brettterpstra.com/uploads/2025/01/diagnosis-rb.jpg" title="Scrabble letters" width="800"/> </noscript> </picture> Last time I <a href="https://brettterpstra.com/2024/11/28/a-health-update/">wrote about my health</a>, I had an inkling of what was going on with me, and now I have some diagnoses to work with. Thanks to my readers for their support as I grapple with my health changes. I knew I had some form of <a href="https://my.clevelandclinic.org/health/diseases/6004-dysautonomia" title="What It Is, Symptoms, Types & Treatment">dysautonomia</a>, but I was having trouble finding a doctor who was curious enough about my various symptoms<a class="footnote" href="https://brettterpstra.com/2025/01/19/health-update-diagnoses/?utm_campaign=blog_post&utm_source=mastodon#fn:symptoms" rel="footnote" role="doc-noteref">1</a> to give me a diagnosis. I finally found what I needed through the <a href="https://www.eds.clinic/" title="The EDS Clinic:Medical Care for Ehlers Danlos Syndrome"><abbr title="Ehlers-Danlos Syndrome">EDS</abbr> Clinic</a>, with a hat tip to <a href="https://terra.incognita.net/@blackqueeriroh">Bryan Guffey</a> for pointing me there. It was a Telehealth appointment, which allowed for visual tests like mobility and basic orthostatic tests, but lacked blood work, so some of these are initial diagnoses that could change. Just that morning I’d had an orthostatic pulse and blood pressure reading at Gundersen Health, so I was armed with the numbers and observations from that. I came out of it with diagnoses of: <ul class="abbr_desc"> <li><a href="https://www.ehlers-danlos.com/what-is-hsd/" title="The Ehlers Danlos Society"><abbr title="Hypermobile Spectrum Disorder">HSD</abbr></a></li> <li><a href="https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots" title="Causes, Symptoms, Diagnosis & Treatment"><abbr title="Postural Orthostatic Tachycardia Syndrome">POTS</abbr></a></li> <li><a href="https://my.clevelandclinic.org/health/diseases/mast-cell-activation-syndrome" title="Mast Cell Activation Syndrome (MCAS)"><abbr title="Mast Cell Activation Syndrome">MCAS</abbr></a></li> <li>And likely <a href="https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988" title="Thoracic outlet syndrome-Symptoms and causes"><abbr title="Thoracic Outlet Syndrome">TOS</abbr></a></li> </ul> None of these are surprises — I had done extensive research on autonomic disorders and knew where my symptoms fit (and where they didn’t). Thanks to a growing database in <a href="https://www.devontechnologies.com/apps/devonthink" title="DEVONthink, professional document and ...">DEVONthink</a> and some research help from my partner, I had a cross-referenced list of symptoms and possible correlations ready to go. I’ve found that with rare diseases — especially ones that don’t show up in blood work or show up with results that are individually explicable in other ways — it’s best to show up armed with as much information as possible. Thankfully, because the clinic specialized in <abbr title="Ehlers-Danlos Syndrome">EDS</abbr>, the physician was ready to listen and fully versed in the various disorders and syndromes comprising dysautonomia. So now that I have some diagnoses, I’ve started treatment, and things have improved markedly. Some interventions — like increasing water and salt intake and applying abdominal compression — are easy and have already improved my <abbr title="Postural Orthostatic Tachycardia Syndrome">POTS</abbr> symptoms, which include dizziness and syncope (passing out) when standing up. I’m more functional than I have been in six months. And I’ve started medications, both over the counter and prescription, which have started to help symptoms like constant dizziness (even when seated or prone) and skin burning. I’m still dizzy as I write this, and some of these interventions might take a while, but things are getting better. I’ll follow up with some blood work, and I need to find <abbr title="Ehlers-Danlos Syndrome">EDS</abbr>-aware physical therapists, but I have referrals and orders for all of that. It’s such a relief to be making forward progress. I’ve communicated with people with similar diagnoses who’ve told me that it took two or more years (in one case six) to get a diagnosis and treatment. I’ve joked that my current title is: Brett Terpstra <abbr title="Minneapolis College of Art and Design">BFA</abbr>, <abbr title="Attention Deficit Hyperactivity Disorder">ADHD</abbr>, <abbr title="Substance Use Disorder">SUD</abbr>, <abbr title="Bipolar Disorder">BD</abbr>, <abbr title="Religious Trauma Syndrome">RTS</abbr>, <abbr title="Complex Post Traumatic Stress Disorder">CPTSD</abbr>, <abbr title="Hypermobile Spectrum Disorder">HSD</abbr>, <abbr title="Postural Orthostatic Tachycardia Syndrome">POTS</abbr>, <abbr title="Mast Cell Activation Syndrome">MCAS</abbr>, <abbr title="Thoracic Outlet Syndrome">TOS</abbr> Which is quite a Scrabble board, but it looks more impressive than just having an “MD” after your name, right? I only went to college for four years, but I’ve gathered a lot of letters since then (and none of them great). I’m so thankful for my community — from readers here to Facebook to Mastodon to real life friends and family — and the leg up I got by sharing openly and receiving information from them. I know that I might be risking some privacy by sharing too much, but the benefits have been great thus far. I never would have gotten to this point without help. I have further to go, but I feel like I’ve cleared some major hurdles at this point. And seriously, I need to write about <a href="https://www.devontechnologies.com/apps/devonthink" title="DEVONthink, professional document and ...">DEVONthink</a> and how useful it was in all of this. I’m hesitant because I have so much more to learn about it, but the more I talk about it and hear from other people, the more I realize that so many users are in the same boat: using it for specific reasons but feeling like they’ve only scratched the surface of its capabilities. So I’ll probably write about the subset of features I’ve used for this specific research, rather than write <a href="https://www.takecontrolbooks.com/devonthink-3/">a whole book about it</a><a class="footnote" href="https://brettterpstra.com/2025/01/19/health-update-diagnoses/?utm_campaign=blog_post&utm_source=mastodon#fn:tc" rel="footnote" role="doc-noteref">2</a>. Stay tuned. References: <ul class="abbr_desc"> <li><a href="https://my.clevelandclinic.org/health/diseases/6004-dysautonomia" title="What It Is, Symptoms, Types & Treatment">Dysautonomia</a></li> <li><a href="https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots" title="Causes, Symptoms, Diagnosis & Treatment"><abbr title="Postural Orthostatic Tachycardia Syndrome">POTS</abbr></a></li> <li><a href="https://www.ehlers-danlos.com/what-is-hsd/" title="The Ehlers Danlos Society"><abbr title="Hypermobile Spectrum Disorder">HSD</abbr></a></li> <li><a href="https://my.clevelandclinic.org/health/diseases/mast-cell-activation-syndrome" title="Mast Cell Activation Syndrome (MCAS)"><abbr title="Mast Cell Activation Syndrome">MCAS</abbr></a></li> <li><a href="https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988" title="Thoracic outlet syndrome-Symptoms and causes"><abbr title="Thoracic Outlet Syndrome">TOS</abbr></a></li> <li><a href="https://www.ehlers-danlos.com/what-is-eds/" title="The Ehlers Danlos Society"><abbr title="Ehlers-Danlos Syndrome">EDS</abbr></a></li> <li><a href="https://en.wikipedia.org/wiki/Substance_use_disorder"><abbr title="Substance Use Disorder">SUD</abbr></a></li> <li><a href="https://en.wikipedia.org/wiki/Bipolar_disorder"><abbr title="Bipolar Disorder">BD</abbr></a></li> <li><a href="https://www.healthline.com/health/adhd"><abbr title="Attention Deficit Hyperactivity Disorder">ADHD</abbr></a></li> <li><a href="https://my.clevelandclinic.org/health/diseases/24881-cptsd-complex-ptsd"><abbr title="Complex Post Traumatic Stress Disorder">CPTSD</abbr></a></li> <li><a href="https://en.wikipedia.org/wiki/Religious_trauma_syndrome"><abbr title="Religious Trauma Syndrome">RTS</abbr></a></li> <li><a href="https://www.mcad.edu/"><abbr title="Minneapolis College of Art and Design">BFA</abbr></a></li> </ul> <div class="footnotes" role="doc-endnotes"> <ol> <li id="fn:symptoms"> Constant dizziness, passing out, skin and bone pain, changing vision, etc. etc. <a class="reversefootnote" href="https://brettterpstra.com/2025/01/19/health-update-diagnoses/?utm_campaign=blog_post&utm_source=mastodon#fnref:symptoms" role="doc-backlink">↩</a> </li> <li id="fn:tc"> Take Control of DEVONthink 3 is a great book and I’m learning quickly thanks to Joe Kissel’s excellent instruction. <a class="reversefootnote" href="https://brettterpstra.com/2025/01/19/health-update-diagnoses/?utm_campaign=blog_post&utm_source=mastodon#fnref:tc" role="doc-backlink">↩</a> </li> </ol> </div> https://brettterpstra.com/2025/01/19/health-update-diagnoses/?utm_campaign=blog_post&utm_source=mastodon