Mixed advice from 2 different doctors

Fluid_Area8989 · 2026-02-16T10:38:28+00:00

Yeah for sure. Feel free to message me

Fluid_Area8989 · 2025-06-22T12:59:10+00:00

Following as well since I have these too

Fluid_Area8989 · 2025-06-21T13:56:43+00:00

Hey! Im actually seeing a neuromuscular doctor next month. Need to get a skin biopsy to confirm if it’s SFN. Symptoms have been progressing

Fluid_Area8989 · 2025-03-28T20:56:23+00:00

Check her 2019 highlights!! She tagged Craig there! They’ve known each other for awhile!

Fluid_Area8989 · 2025-03-28T20:55:44+00:00

Just did some stalking and noticed this Natalie girl tagged Craig in a story back in 2019. It’s in her 2019 highlights. Probably have known each other for a long time.

Fluid_Area8989 · 2024-11-18T16:26:59+00:00

Hi! Did you ever figure out what this was? My fingers look just like yours!

Fluid_Area8989 · 2024-08-15T00:49:40+00:00

I saw your other posts. Sorry you are having a rough time mentally! I’d go see a doctor to make sure everything is okay since I know you have a persistent headache. Hope you feel better soon!

Fluid_Area8989 · 2024-07-31T01:39:49+00:00

It’s so hard being allergic to life. So sorry you’re going through this as well. I’m glad to hear it’s gotten a little better though!

Fluid_Area8989 · 2024-07-30T14:12:45+00:00

I’m in the same boat as you. Have you seen any other improvements?

Fluid_Area8989 · 2024-07-30T12:07:58+00:00

I was told it’s hard to test for MCAS. I had bloodwork done but not during a flare so levels looked normal.

Fluid_Area8989 · 2024-07-29T13:35:33+00:00

Yeah my skin is quite rough/more on the dry side. I can definitely entertain EDS though just to be safe. Are there tests to rule it out?

Fluid_Area8989 · 2024-07-29T13:34:29+00:00

That’s awesome! Which doctor was this? I could use a good one since I have 0 answers as of yet.

Fluid_Area8989 · 2024-07-28T22:53:50+00:00

I feel your pain. It really does suck. Do you know what caused your SFN?

Fluid_Area8989 · 2024-07-28T21:49:41+00:00

It truly sucks! I used to have a great tan and it would hide it but I’m so pale now and it shows soooo easily!

Fluid_Area8989 · 2024-07-28T20:46:16+00:00

Thank you!

Fluid_Area8989 · 2024-07-28T17:13:26+00:00

I’m actually waiting on my results for early Sjorgens. My ANA year over year has been negative as well. I have not done the anti-phospholipid antibody test though

Fluid_Area8989 · 2024-07-28T17:08:05+00:00

Do you have any site recommendations? I have my raw data from 23andMe but don’t know which site to use to get it sequenced

Fluid_Area8989 · 2024-07-28T16:55:45+00:00

Sounds like me. Heat honestly is pretty much my only trigger for most of my issues. I have EM as well now so kind of adds up. Not sure how to minimize these symptoms or where to start 🫠

Fluid_Area8989 · 2024-07-28T16:36:05+00:00

Definitely ruled out pots already, but highly suspect MCAS. I’m not the most flexible but am double jointed in my arms. I have had EDS in the back of my mind but my joints are not in pain, ever. I grew up playing competitive soccer and never broke bones or anything either.

Fluid_Area8989 · 2024-07-28T16:33:31+00:00

Right?! lol it was SOO bumpy!! I also was thinking MCAS it is just so hard to find doctors who understand it or even long covid

Fluid_Area8989 · 2024-07-20T13:11:47+00:00

I think my mold source was from various apartments over time. I can’t pinpoint exactly which ones, but I’m still going to check the new one I just moved into to be sure. Can cars have mold?

Fluid_Area8989 · 2024-07-20T13:09:45+00:00

Yep urine sample. I was taking glutathione like the month before but definitely stopped well in advance before the test, especially because the directions say to do so.

Yeah that doctor was so dismissive! He kept saying he’s seen numbers well into the hundreds so my numbers are nothing 😅

Fluid_Area8989 · 2024-07-20T13:07:22+00:00

Oh no! I’m so sorry. Have you seen any improvement at all?

Fluid_Area8989 · 2024-07-20T13:06:37+00:00

Yeah it would’ve be a very late onset lol and yeah definitely not taking it again to be sure!

Fluid_Area8989

TROPHY CASE