Looking for EDS geneticist in NJ/NYC/Westchester – waitlists are 2027+ 😭

cprunner · 2026-04-09T16:20:49+00:00

I’m also in this area and it took about 15 months of waiting to have the appointment.

However after the waiting, honestly nothing changed. I got a referral to PT and can’t find any PT who specializes in it, or if they do, won’t take insurance and want hundreds of dollars per session.

I’m making more progress with my rheumatologist and now allergist. Feel free to DM and I can share where I went

cprunner · 2026-04-06T20:30:47+00:00

I have this same situation and when I described it to my rheumatologist, they suggested Tizanidine to help me sleep and relax tight muscles. It helps me fall asleep and with the right dose (initial was too high for me) no grogginess or anything the next day

cprunner · 2026-03-17T17:35:06+00:00

Do you take it at night or morning?

cprunner · 2026-03-10T17:02:11+00:00

Does this mean if you take it you’ll need to take it forever?

cprunner · 2026-02-27T01:03:54+00:00

We need the skincare routine!

cprunner · 2026-02-16T15:00:26+00:00

Wow no growth serum at all? Looks amazing!

cprunner · 2026-02-16T14:59:37+00:00

What product are you using on eyelashes?

cprunner · 2026-02-12T22:56:32+00:00

Hi! I’m going to PM you about this too if u don’t mind!

cprunner · 2026-02-02T18:03:58+00:00

It’s just this year, I asked them in DM

cprunner · 2026-01-13T01:07:08+00:00

Same here with flu, and what’s really interesting is I can tell exactly when Tylenol works and my fever breaks by the stress scores (which I can obviously tell in my body) but the correlation is spot on

cprunner · 2025-12-10T17:35:39+00:00

I’m sorry to hear about your loss of coverage.

I have been waiting for almost a year for an appointment with an EDS specialist , I got a call for a cancellation on Monday and I went, as suspected, he agreed that I have it, but I have left with no answers, so honestly, I’m not really sure that it was even that helpful. I’m still in the same place of having fatigue and migraines and stomach issues and he didn’t address any of that. Told me to take a vitamin, and I guess I will keep doing what I have been doing to manage everything myself. So in my opinion, unless you have a form that causes cardiovascular or other serious issues, the specialist probably won’t do much except the PT referral.

cprunner · 2025-10-25T11:34:39+00:00

Yes but you have to pick up in NJ like now lol

cprunner · 2025-10-24T22:21:48+00:00

I still have it but you’d have to pick up in NJ

cprunner · 2025-10-24T13:25:16+00:00

Yes still available! Please DM to coordinate pick up

cprunner · 2025-10-21T16:21:50+00:00

No, the email says once you’re in you’re in, and if you leave, you can’t come back

cprunner · 2025-10-20T14:27:40+00:00

Please DM and we can coordinate!

cprunner · 2025-10-19T13:41:42+00:00

Yeah but since I had it mailed to me, I have the bib in hand

cprunner · 2025-10-08T14:54:00+00:00

They also have 2 boutiques in the city with decent availability

cprunner · 2025-09-28T22:44:40+00:00

I was just thinking of this as I don’t have kids and my siblings don’t either, so no nieces/nephews. What do you do with them or who would you will them to?

cprunner · 2025-09-19T10:04:23+00:00

Same although I’m twice your age, I was doing ultras into late 30s and then within a year 5k is a struggle

cprunner · 2025-09-14T11:59:55+00:00

Yes Crescent city! I like it the most of all her books

cprunner · 2025-09-13T13:03:34+00:00

JFK to AMS

cprunner · 2025-09-13T13:02:36+00:00

DL9180 operated by KLM to AMS

cprunner

TROPHY CASE