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For the first time, a doctor didn’t just look at one symptom…she looked at everything together.
And it finally makes sense.
I have Ehlers-Danlos Syndrome (fragile connective tissue), plus Mast Cell Activation Syndrome (inflammation) and Hypogammaglobulinemia (low antibodies).
That combo=inflammation affects my nervous system Postural Orthostatic Tachycardia Syndrome (POTS)
* iliac vein compression (May-Thurner Syndrome) poor blood flow
Now we’re also looking at brain pressure (possible Idiopathic Intracranial Hypertension), involving the Superior Sigmoid Sinus which could explain the head pressure, pulsatile tinnitus, and vision issues.
Next steps:
*MRI brain + spine (CSF protocol)
*Immunology referral (work on IG & MCAS)
*Neuro-ophthalmology (check for swollen optic nerve)
*Start Acetazolamide (if tolerated)(to reduce pressure)
*Then revisit POTS meds after calming inflammation
*Possible stent in my head
For the first time, someone is treating the whole system—not just pieces. And it feels like a miracle, honestly.
Comment “veins”for vascular compression research
My Dr is Dr Jill Rau, Scottsdale HonorHealth Neurology
Questions? Experience similar things? Anyone else living with multiple diagnoses that are actually connected? What’s your experience?
#iih #POTS #MCAS #EDS #VascularCompression
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