Curious if anyone else has been in my position (but I think I know the answer to that one).
After a recently abnormal tilt table, I was diagnosed with having Orthostatic Intolerance. 7 yrs ago I had a cardiac ablation for my SVT, so we all are wondering had that not happened, would I also be experiencing more POTS like symptoms. I have gut motility issues now, diagnosed with IBS in 2002, food allergies and intolerances for the past 10 years, but got to a good point up until the last 6 mos or so. Due to the high reactivity in my bloodwork from gluten, it was also presumed I may have celiac disease but could never be tested since I had cut it out 3 years prior. I should also add we have rampant autoimmune diseases in our family- Hashimoto’s, Diabetes, RA, Alopecia Areata.... but I have never been diagnosed with one. My cortisol levels are low so going in to see an endocrinologist this month.
In 2017, I had a craniectomy and also a C-section both within a year of each other. I understand (1 year postpartum) why my ANS would be a little wonky from these two surgeries.
After further digging and piecing together some family history, I’m wondering what type of genetic disorder testing to pursue. Ehlers-Danlos keeps popping out but my cardiologist doesn’t feel I fit the mold. I’d say I am definitely in the hypermobile class. Both my sister and I, and now my niece, have double-jointed elbows, hyper-extendable knees and wrists. I’ve managed to blow out 3 of my ribs from getting sick with a cough (maybe related, maybe not?). During pregnancy I was told I had Symphysis Pubis Dysfunction or SPD bc I could barely walk in my 2nd trimester. I had PROMM and our preterm baby at 32 weeks. Three months later, I had debilitating SI joint pain and could barely walk. I’m wondering if any or all of this is all tied in together? I had read an article about the trifecta. POTS-EDS-Mast Cell. My mom’s side, with all of the autoimmune diseases, seems like the Mast Cell type. We react to any and everything it seems like- bee stings, shellfish, latex, products...anything touching the skinner that is consumed.
Wondering if anyone has any insight...or if this sounds like another disorder we haven’t given thought to? Are these symptoms so obvious to someone who has the exact same ones?
Thanks to any help in advance since I know Dysautonomia can leave us all too tired to type.
‘The Desperate One