Participated in a very interesting multidisciplinary POTS conference at @HopkinsMedicine on the topic of #FND, #syncope and #POTS where we discussed and debated the numerous issues surrounding FND diagnosis in our patient population. 1/🧵 #MedTwitter#NeuroTwitter
@HopkinsMedicine After conference, saw a patient who highlighted the issues discussed at conference.
👩🦽30 yo woman with POTS/MCAS/EDS triad with one TTT positive for POTS, but a 2nd TTT negative
❌ A neurologist diagnosed her with FND
💉 She is on allergy shots & many H1/H2 blockers.
2/🧵
@HopkinsMedicine 🚫 Neurologist didn't take into consideration neurologic and psychiatric manifestations of SYSTEMIC DISEASE (MCAS)
❌ This is not FND because there is underlying systemic disorder driving symptoms and signs.
🧠 Patient needs to be treated for the SYSTEMIC DISORDER first.
3/🧵
@HopkinsMedicine Common scenario: internists, allergists & rheumatologists are not familiar with neurologic and psychiatric manifestations of systemic disease while many neurologists and psychiatrists are not aware of the wide spectrum of neuropsych manifestations of systemic disorders.
4/🧵
@HopkinsMedicine Misuse of FND diagnosis then becomes a knee-jerk reaction instead of thoughtful review and recognition of numerous neurologic and psychiatric symptoms and signs that patients with autoimmune, inflammatory, hematologic, neoplastic and hormonal disorders may develop.
5/🧵
@HopkinsMedicine ✅ Important to work together as a multidisciplinary team - patient care should not be an ego competition!
✅ Reach out to a specialist for a 2nd opinion before confirming your diagnosis - no shame in asking for help!
✅ Keep an open mind & don't close the door on diagnosis. 6/6
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@Dysautonomia What the study found:
✅ Out of 59 patients who qualified for #FND diagnosis by DSMV criteria, 88% had autonomic symptoms!!!
✅ 27% were positive for ganglionic acetylcholine receptor antibody (gAchR Ab) via LIPS assay.
✅ 50% had #POTS.
✅ 50% had orthostatic hypotension.
2/🧵
@Dysautonomia Why is this important?
✅ Our patients are often misdiagnosed with #FND, and this study proves that.
✅ When #FND is diagnosed, treatment is psychotherapy & physical therapy, which is not a treatment for #Dysautonomia.
✅ We MUST identify and treat #Dysautonomia symptoms.
3/🧵
On biomarkers: Patients with #Dysautonomia have preload failure. Invasive caridopulmonary testing or cardiac catheterization proves it. I just had a patient with post-Covid #POTS who had the tests done to rule out heart disease. She had no CAD, but did have preload failure. 1/🧵
Her excellent cardiologist @FudimMarat identified the problem and correctly diagnosed it. His findings were consistent with Dr. Systrom's study on preload failure. 2/🧵 onlinelibrary.wiley.com/doi/10.1086/68…
This patient was fortunate: she wasn't dismissed because her 2D cardiac echo & 24-hr Holter monitor were negative. Many patients with #Dysautonomia and #LongCovid are simply discounted as anxious or deconditioned when their routine cardiac & neurologic tests are unrevealing. 3/🧵
I love it when a patient tells me that they feel 70% better compared to a few months ago. How did we achieve this? By using MEDICATIONS. I see so many #POTS patients who's seen many doctors for years, but barely any meds have been tried. Finding the right meds is the key. 1/🧵
Most of my patients have seen dozen of doctors before. They're not interested in me recommending increased fluid and salt intake: they've already tried it, and it's not enough. They want symptomatic relief. They want regaining their ability to work. They want solutions! 2/🧵
We have a variety of medications to offer from different classes and with different mechanisms of action. I encourage my colleagues to use them: start one medication at a time and at a low dose. One failed beta blocker trial doesn't preclude trying another beta blocker. 3/🧵
✍️ Inspired by others, here is my top 10 list of noteworthy 2022 studies on #POTS & other common forms of #Dysautonomia (in no particular order). #MedTwitter 🧵1/10
@ArturFedorowski 2⃣ "Platelet storage pool deficiency and elevated inflammatory biomarkers are prevalent in Postural Orthostatic Tachycardia Syndrome" by Blair Grubb et al. mdpi.com/2073-4409/11/5…
Believers that #LongCovid is "all in your mind" because there are on specific biomarkers or routine diagnostic tests are "normal" need to look at other autoimmune/inflammatory disorders. In #MultipleSclerosis, or example, it took decades to refine the diagnostic criteria. 1/🧵
First, before MRI/CT scans were invented, many #MS pts were misdiagnosed with psych disorders, including hysteria. Spinal taps in MS patients did not always reveal abnormalities. Many patients had various non-specific white matter lesions in MRI, but some had few or none. 2/🧵
Some #MS pts had optic neuritis, but many did not. Some had a lesion in the cervical cord, and many did not. How do you make sense of it all? It took many years and several revisions to come with the diagnostic criteria that we use today to diagnose MS and MS variants. 3/🧵
🧵The new generation of doctors should be trained in compassion & non-biased approach in patients with chronic illness. Many of us have been trained to think "it's just anxiety" or "they're somatizing" when faced with a difficult patient. We were primed to dismiss & gaslight. 1/n
I remember attendings teaching us that if a nonparalyzed pt is in a wheelchair w/ sunglasses on for light sensitivity, that's a bad sign (ie a sign that they have psych problems, not real physical illness). I didn't know then that they would be my patients with #Dysautonomia. 2/n
I now teach medical students who work with me to never assume that the patient's complaints are due to a psychological problem: do the workup thoroughly, and if you still don't know what's wrong, tell them so and then refer them to someone else. Don't dismiss, label or judge. 3/n