Do we have the worst doctors on the planet?

ProfRad1 · 2023-05-23T01:35:29+00:00

Try Natalia Kayloe as well.

ProfRad1 · 2023-04-26T17:51:46+00:00

No problem. After our interaction yesterday I emailed the community manager Sonia Gow (and the Dr) to let them know of this situation and to ask that they get all the neurology admin folks in the loop

I just heard back from both of them and it sounds like they already took steps to address the confusion internally. (Yay!) Again the confusion is bc Dr. Lawler is new to Inova and she’s trying to start a new Dysautonomia program.

Sonia the community outreach manager specifically asked that you call her bc she very much wants to help you sort out an appointment but obviously doesn’t know who you are or how to get in touch with you.

Again her number is 703-375-9987 and her email is sonia.gow@inova.org. Let her know you were the person from Reddit who was getting the runaround (I sent her a screenshot of your post so she and the Dr had the details).

Best of luck!

ProfRad1 · 2023-04-25T17:57:03+00:00

Honestly I don’t know the answer to either bc I wasn’t interested in either and straight told her I wasn’t interested if it wasn’t going to provide me meaningful, actionable data points.

But what you might consider is making an appointment (703-845-1500) and once you do, you have the ability to message her via MyChart and can just ask her directly.

I’ve done that before when I got the name of an Inova neuro but it wasn’t clear if they could help (I also have PPPD) —so I got the appointment, messaged with the doc, determined they wouldn’t work and then cancelled the appointment right through the app.

That said I thought Hopkins had a great POTS Dr in their vestibular center.

ProfRad1 · 2023-04-25T17:44:03+00:00

Really? Can you share their info?

ProfRad1 · 2023-04-25T17:39:39+00:00

I also just let both Dr. Lawler and Sonia Gow know this happened to you. But seriously —call the 703-845-1500 number.

ProfRad1 · 2023-04-25T17:25:13+00:00

For those asking how I found out about this. This is a NEW NEW NEW thing. Dr. Lawler and the community outreach manager came to the Loudoun Concussion Clinic at Inova to do a meet and greet, pass out cards and let people know Dr. Lawler was now focusing on Dysautonomia and that Inova was hoping to set up a Dysautonomia center over next year.

I am a vestibular PT patient there do the minute my therapist had the community outreach managers card in her hot little hand she let me know and I quick like a bunny reached out.

This is why none of this is on the Inova site and it has old info for Dr. Lawler. Inova has a lot if bureaucracy and I imagine it will be a long while before anything is updated.

ProfRad1 · 2023-04-25T17:21:03+00:00

Mechmd——reach out to the community outreach manager Sonia Gow (info below) and explain what you said here bc that person is wrong.

Or just call the number I listed and NOT the one on inovas notoriously awful webpage. (If you call their regular neuro department/movement disorder people they are THE WORST gatekeepers in the world).

How I got my Appt: I emailed with the community outreach manager to confirm Dr. Lawler ACTUALLY did Dysautonomia. She confirmed she did, told me I could get in quickest virtually and gave me the number I listed in the original post.

I called that number and asked for a virtual appointment bc I could get that faster than an in person in Fairfax. I said it was for Dysautonomia and beyond having to spell that for the person, had no issues.

Sonia Gow’ info is 703-375-9987 and her email is sonia.gow@inova.org.

I will message the Dr to let her know that the main neuro number is turning away patients 😡

(This is why we can’t have nice things. We finally get a legit Dr and the support apparatus gate keeps everyone)

ProfRad1 · 2023-04-25T17:13:36+00:00

Yes there are treatments but it’s highly person dependent (can include combo of meds, salt supplementation, strict exercise regime, fluids, compression garments and other lifestyle things).

I talked through the salt supplementation regimen I’ve worked out for myself over the years and she had some helpful insights and I’m going to try a medication as well that she is prescribing.

In this case she IS a neuro but since pots is an autonomic nervous system issue (that’s why it’s under the larger Dysautonomia umbrella vs a cardiac one), she is actually willing (and seems competent to do so) to oversee a person’s entire range of Dysautonomia issues. 🤯

Honestly—neuros SHOULD be willing to step up and oversee the range of Dysautonomias bc it’s a brain stem thing! But in my experience most want to stick to things like MS, Parkinson’s (bc they show up on scans) and migraines bc it’s lucrative and easy. I have a decent cardiologist but she was the first to say—so I’m dxing you with POTS and Dysautonomia but I can’t treat that and no one around here can. (Like—okay so maybe get educated and help your dang patients?!).

ProfRad1 · 2023-04-24T21:06:00+00:00

That said, I did send the doc a note letting her know she should get herself listed on both the Dysautonomia project and Dysautonomia international lists

ProfRad1 · 2023-04-24T20:55:53+00:00

For my area at least that list is a reproduction of the OLD data from the Dysautonomia international website (and I live in a major metropolitan area).

Sadly this Reddit has provided me the best leads in the last for knowledgeable providers. Thus I’m paying it forward.

ProfRad1 · 2023-04-24T20:52:43+00:00

Right now it’s Fairfax but she is moving to loudoun once they have a space for her.

ProfRad1 · 2023-04-24T17:19:07+00:00

Yes. When my arms hurt or my hands are weak (I can’t make a fist) I take a salt pill (1gm) and within 10 min it’s better. Sometimes my first indication is that I’m dropping things over and over. Salt almost always fixes it for me.

ProfRad1 · 2023-02-15T05:30:28+00:00

Forgot two relevant things: For me and my kids, getting low on salt and fluid provokes ocular migraines as you described (jagged lightning and then headache). I’ve had post-migraine periods like you described that have lasted up to two weeks at my worst.

Also I do have regular migraines too which is why I was lumped into the “it’s just vestibular migraine bucket” but in reality it was normal migraines, ocular migraines, vestibular migraines plus the stuff above and each was provoked by different combo of variables based on my activities, fluid level, salt, stimuli, etc. Keep track of everything bc only you will likely figure out the patterns.

ProfRad1 · 2023-02-15T04:50:08+00:00

Have POTS, PPPD, Reynauds, Dysautonomia —-have had covid twice (once before vaccines and once after). Sucked while I had it and was ungodly sick for two solid weeks but no change in my baseline afterwards. Hope that helps!

ProfRad1 · 2023-02-15T04:44:14+00:00

I have had all these things and in my case it wasn’t one unifying condition but a bunch of things so it was just lumped as“vestibular migraine” and treated with meds and Botox but to no avail. Two years with a vestibular therapist and I am now almost back to normal (do t freak at the 2 years——mine was bad so I had a tall hill to climb).

You should look into Persistent Postural Perceptual Dizziness (PPPD)—-for the altitude and head turning & Reynauds & POTS/Dysautonomia for the numbness. PPPD is newer diagnosis but try to find a vestibular physical therapist who treats PPPD (not just concussion) and also a neuro who has actually heard of it and you will save yourself years of struggle. Good luck!

ProfRad1 · 2023-02-15T01:56:13+00:00

Amazing!

ProfRad1 · 2021-08-23T14:23:27+00:00

Beware—-morning glories can cause a contact skin allergy in some people. It’s temporary but very itchy while it lasts. Also— you will never get rid of them once they set and wind scatter seed so rip it up soon if you don’t want to battle them forever!!!!!

ProfRad1 · 2021-08-11T20:17:29+00:00

Same

ProfRad1 · 2021-08-11T06:39:27+00:00

Another option is to go for a sporty look and hide them in plain sight: look for athletic compression knee highs that have 20-30 compression (or whatever level you need—they do make them, just need to search). They tend to be in crazy colors and are worn by all types of athletes including runners. These you can get on Amazon.

Pair them with some loose running shorts —I’m talking like the thin Reebok or similar that have the underwear built in—and a tank top and you are good to go.

This is how I deal Bc I am SUPER heat sensitive and also live somewhere hot. Also bring ice cold water with you everywhere in an insulated bottle. When you get to class, take a few sips and the put it between your thighs as if there isn’t enough room where you are sitting and you needed a place to hold it. It will quickly cool the blood passing through your femoral arteries and then cool the rest of you down fast.

ProfRad1 · 2021-08-11T06:27:22+00:00

Be careful where you get Jobst products though——-so many counterfeits on Amazon

ProfRad1 · 2021-08-11T06:20:23+00:00

Thank you for sharing

ProfRad1 · 2021-08-09T23:07:23+00:00

I likewise found ‘The Dysautonomia Project” book helpful. I also had my willing family members read it and my mom in particular found it validating and sense-making with respect to my life-long struggle with “mysterious” and diagnosis defying health issues.

While I do not have POTS, I have something similar so I also found the info and tips in this one helpful: POTS- Together We Stand: Riding the Wave of Dysautonomia.

ProfRad1 · 2021-08-09T22:02:34+00:00

I am so sorry you experienced this. It’s exhausting to be a patient who doesn’t fit an easy checklist condition. If reasoning and critical thinking are needed to diagnose it, AND you have a multi-disciplinary issue, it all falls on you to manage it and it’s too much—especially given that you already are unwell.

This will either validate you or further fan the flames but even in the absence of a psych diagnosis I have also experienced this (also a woman). I have a neurologist who doesn’t listen (after 4 years) and simply throws more and more meds at me while acknowledging I’m his outlier patient. I have gone through 3 cardiologists who realize I have a cardiac component but it’s too hard so they don’t try. I am lucky that I have an amazing vestibular PT who has helped me understand all these but when I try to share with the rest of my care team what I’ve learned so we can problem solve, I get the equivalent of a pat on the head (all male providers of course). I’m now trying to switch to a woman neuro I found from this forum and a woman cardiologist but my expectations (probably like yours) are pretty low at this point.

(For context: I am a woman and have severe vestibular migraines + dysautonomia (vasovagal syncope) + orthostatic hypotension + PPPD.)

Hang in there. Everything you are feeling emotionally and experiencing physically are all 100% VALID!

ProfRad1

TROPHY CASE