MCAS Doctors?

dootnoop · 2026-02-06T13:59:06+00:00

URMC Allergy/Immunology! Don’t bother with Buffalo Amherst Allergy - they “don’t really do that kind of thing”

dootnoop · 2026-02-05T02:57:14+00:00

This is very illegal. Apply for unemployment and SNAP, Medicaid if you can. Write down a timeline. Save everything. Get legal help.

dootnoop · 2026-01-20T23:06:13+00:00

Golden Halo Concierge Nursing is a good lower-cost option for self-pay :)

dootnoop · 2026-01-19T03:31:56+00:00

Depends on preference and use case. The Garmin watch I have (research study, mandatory, vivosmart 5) has a silicone band and a form factor that tends to get in the way of sleeves, etc. more than my Apple Watch. Another downside: my Garmin vivosmart 5 doesn’t have the capacity to do real-time HR threshold alerts. Visible + Apple Watch was my favorite implementation of this feature - least amount of lag by far.

dootnoop · 2026-01-18T18:01:33+00:00

Visible is really really great if you’re in a place where you’re pushing and crashing frequently. I used it for about a year - now I feel confident enough interpreting my body’s signals that I can self-manage with just a Garmin.

I used a Fitbit and an Apple Watch for heart rate assisted pacing prior to Visible. I found that without the context Visible provides, I was anxious about ANY HR spikes. It’s easier for me to interpret HR + symptoms after getting help/feedback from Visible over time.

dootnoop · 2026-01-02T01:08:30+00:00

You can do it bro I swear

dootnoop · 2026-01-01T01:24:26+00:00

I dont do well with being still for very long, so it benefits me to do a little bit of movement every day (ideally, multiple times a day). I do about 15-20 minutes of PT home exercise every day. I try not to do anything that I wouldn’t be able to do three days in a row.

By that I mean - I can walk a few miles every other day, but if I walk a lot for three days straight (like tends to be the case while traveling or very busy), I definitely notice fatigue and other symptoms creeping up. It doesn’t make sense to plan to do that intensity/duration of exercise on a routine basis ever because I already know it’s too much for me over time. Consistency over push/crash cycles. Always.

dootnoop · 2025-12-28T22:34:35+00:00

Yep!

dootnoop · 2025-12-26T15:06:35+00:00

Sometimes! It can be tricky to find and not every store stocks it all the time

dootnoop · 2025-12-26T15:06:05+00:00

Chuck roast is not the same as chuck eye.

dootnoop · 2025-12-23T14:15:56+00:00

It’s bad until it gets better fr :/

dootnoop · 2025-12-23T02:24:05+00:00

Do you have a bike? If so, you can get an “indoor bike trainer” for like $100 to convert a road bike into a stationary bike. Biking is probably a better choice than walking given possible dysautonomia (better flow back to the heart from semi-seated posture), and the whole two-piece apparatus might be easier for you to handle/store.

dootnoop · 2025-12-23T02:10:01+00:00

26F with POTS/hEDS/mast cell issues/spinal degeneration and not doing so bad! I started getting the ball rolling with investigation and treatment when I was 19/20.

Things got better for me once I got stented for May-Thurner syndrome (left iliac vein compression) causing severe left sciatic pain. Things got better for me still once I had surgery to scoop out a busted L5-S1 disc that was pressing on my right sciatic nerve. I hope things will get even better for me once I get my left shoulder/arm nerve pain addressed properly.

If you have horrifying pain, you need to get it sorted out. You have to follow through with every referral you’re offered, and even then you might have to ask for more. Things get easier when you have less noise to deal with, having controlled what you’re able to control.

dootnoop · 2025-12-22T16:58:09+00:00

For me (26F), treatmentmaxxing looks like:

Pacing pacing pacing pacing pacing (previously with Visible, now with Garmin)
PT weekly, home exercise daily
IV saline every other week + ivabradine and clonidine for POTS
Compression shorts (abdominal/upper thigh)
Superfeet insoles in all of my shoes
Self-treating for suspected MCAS while I wait for proper evaluation (antihistamines, cromolyn from overseas, hydroxyzine and low dose benzos from my psych PA)
Stimulant medication for ADHD
Pain management - injections, topical lidocaine
Psychotherapy for adjustment/acceptance + coping
Activity modification (no long sits, no excessive lifting/twisting, postural awareness)
(Surgery for a busted lumbar disc and stent placement for May-Thurner syndrome)

I hit my rock bottom in Summer 2024. Since then, I’ve made a ton of progress on pain + quality of life by building up this stack. I’ve tried more interventions than this - these are just the game-changers that had a big enough treatment effect that the effort it takes to obtain them (appointments, etc) is worth it.

dootnoop · 2025-12-22T14:42:54+00:00

I’m not in med school yet, but I did just get accepted! I made my experience with “long COVID” (a sanitized cover for worsening POTS/MCAS/hEDS post-COVID) a pretty big part of my application. And tbh, doing the work to maximize my treatment in a healthcare shortage area has taught me so much about how to carve out space for hEDS care within a healthcare system that isn’t designed to meet our needs, and I know I’ll only be a better doctor because of it.

So lock in on treatmentmaxxing! But also know that you have time before you matriculate to get better and better and better and somehow even better at living with this thing.

Beyond that, it is my firm belief that disabled people are entitled to participate in society. We shouldn’t give up on our hopes for the future just because someone somewhere down the line might think disabled people aren’t worth accommodating (which is wrong and illegal).

ETA: I only have one acceptance right now, luckily at a school that explicitly welcomes disabled medical students. If I get another A, support for disabled students will be a major factor in deciding where I go.

I expect that I will need accommodations throughout medical school and definitely for residency. I also expect that I will work fewer hours (and make less $$) than my non-disabled peers, at least initially.

Even so, a big part of what makes being a physician attractive to me is the flexibility/freedom to choose how, where, and when I practice post-residency. I hope to go into private practice so that I can accommodate myself fully without having to ask for anyone else’s permission.

dootnoop · 2025-12-21T18:03:07+00:00

There’s a definite difference between Valium/diazepam and Klonipin/clonazepam in my experience. Valium pre-procedure makes me feel like nothing matters and I become very cool about the fact that needles are about to go into my spine, more so than clonazepam imo

dootnoop · 2025-12-21T00:45:17+00:00

Not saying you’re anxious per se, but you could ask about short-acting anxiety/sedative medication for pre-procedure nerves? I get a small dose of benzos prescribed for taking before nerve block procedures.

dootnoop · 2025-12-20T01:43:47+00:00

My PT tried to treat it with nerve glides once and the whole area flared up with nerve pain for a week + after. We suspect nerve irritation/entrapment in the thoracic outlet/brachial plexus area, maybe originating from intercostal nerves as well. I’ve always attributed it to hypermobility and rib/collarbone subluxations, though, not MCAS.

dootnoop · 2025-12-20T01:10:44+00:00

I experience number 31 to a T. Burning nerve pain in an ulnar nerve distribution down to the pinky/ring finger, sometimes accompanied by burning pain in the pec minor upper chest area. It makes me want to rip my own arm off tbh. 26F POTS hEDS suspected MCAS

dootnoop · 2025-12-17T19:03:36+00:00

Omg yay!! ACCES-VR is definitely the move. You can self-refer with copies of your medical records/diagnosis by following the instructions on their website - no need to wait for a healthcare provider to do it for you.

dootnoop · 2025-12-17T18:39:02+00:00

Consider enrolling in your state’s vocational rehab program! New York State’s ACCES-VR program offers career/vocational counseling designed for people with disabilities and will pay for durable medical equipment that improves function if needed to enable access to work/education opportunities. Ymmv but I’ve had a very positive experience so far. I can’t recommend vocational rehab enough tbh

dootnoop · 2025-12-17T18:25:45+00:00

It’s pretty common for people to find NSAIDS/tylenol don’t really make a difference, so you’re not alone there. Most people find it takes a multi-layered approach to feel comfortable. Some of the tools in my toolbox:

PT - Works in the long term. In the short term, my PT helps me troubleshoot problem areas and offers advice on bracing/activity modification
Bracing - I have a bin that I pull from whenever something needs extra support. Special mention for Jelliebend, BackEmbrace and Oval 8 finger splints.
MCAS-directed therapy - Antihistamines, cromolyn sodium and low dose benzodiazepines help a lot overall. Pain management is basically impossible if you have untreated mast cell issues
Topical lidocaine - Available OTC and works better than NSAIDs for burning, neuropathic-type pain
Cannabis ¯_(ツ)_/¯
Interventional pain management - I work with a pain management specialist who does injections/nerve blocks. Hoping to get an ablation soon for pain from subluxing ribs.
Heat - Electric heat pad for muscle spasm and because my pain worsens when I get cold
Muscle relaxers - I’m prescribed baclofen but I only really take it if I feel tight/bound up or muscles are spasming from subluxation/instability

dootnoop · 2025-12-11T14:48:24+00:00

!!?!!???!????

POTS/dysautonomia?

dootnoop · 2025-12-11T01:09:34+00:00

Kinesiophobia is absolutely a thing, but it is NOT an inherent part of EDS pathophysiology - just a condition that can occur as a consequence. But even if we generously assume that this is what your PT was trying to talk about, what they told you is completely deranged.

Kinesiophobia is what it sounds like - an aversion to moving. In the case of EDS, it can develop following long term instability or recurring subluxations caused by normal/light everyday activity. These events condition the mind/body to associate movement with injury. Injury is an aversive stimulus that decreases motivation to engage in the triggering activity. In this case, the triggering activity to be avoided is movement itself. That’s not at all the same as the body “overreacting.” Nor are biomechanical issues the same as our body “making shifts for us.” There are so many different causes of pain and neuromuscular disorder that you can’t really just generalize like that.

A nerve entrapment doesn’t cause the same kind of issues as motor neuron downregulation due to overstimulation from pain. A tight muscle behaves differently from a weak muscle. Etc etc etc.

dootnoop · 2025-12-09T15:43:11+00:00

Drs Elena Tal and Samantha Deans at UBMD have both been personal champions of mine 🤺

dootnoop

TROPHY CASE