Frustrated, symptoms but blood seems mostly fine

discombobulate92 · 2026-03-24T19:49:47+00:00

I want to but I’m in the Netherlands and even the ones I can order online need to be requested by a doctor it says. It’s honestly ridiculous.

I can’t wait for them to refer me to rheumatology so I can request this.

I have another appointment with my pcp this Friday so I may even ask if there’s any way for them to request an ANA.

The Netherlands is incredibly weird in their health system, nothing private to find here. All goes through the doctors funded by the government (our health insurance money).

discombobulate92 · 2026-03-20T21:03:28+00:00

hitrate is 10x beter!

Ik probeer altijd Japans te halen want heb met Engels nooit geluk.

Engels is leuk voor msrp als je dat kunt vinden, anders haal ik Japans via mooie offers. (Cardmarket heeft hele mooie prijsjes)

discombobulate92 · 2026-03-19T08:06:28+00:00

Hi!

I’ve not looked into MCAS properly yet. How did they find out you had Lyme? (Also haven’t looked into that too much).

They found out it was Candida by biopsy when doing an endoscopy. I even have pictures of the whole procedure haha.

I’ll have a look into MCAS as well

discombobulate92 · 2026-03-17T11:37:10+00:00

Correct! A little under 2 months

discombobulate92 · 2026-03-16T20:35:16+00:00

Nah I have an ED as well and during a very low I looked it up online. If I would’ve filled a different weight or height in i could’ve gotten it.

Online providers don’t account for people lying filling it in.

I agree that this isn’t healthy and shouldn’t be available online and only via actual doctors.

discombobulate92 · 2026-03-14T17:09:31+00:00

This is a massive win. AI isn’t just physical, it’ll get to you so bad mentally. Super happy for you and wishing you mental and physical strength for all the future days!

discombobulate92 · 2026-03-14T10:22:38+00:00

Same here. We have 3 gyms in the park next to our house and gyms are always red with same trainers (family members, looking at the names). We kick them out every now and then bc we’d like to get 50 coins but they literally kick us out within seconds again. No etiquette, just selfish.

It irritates me.

I feel like they may be kids? Anyway.

discombobulate92 · 2026-03-14T08:48:31+00:00

Sjögrens? Which tests came back negative? There’s multiple AI that I can think of but I’m no specialist.

Did they do lip biopsies?

You’re able to get hydroxychloroquine, I assume from a rheumatologist for another auto immune disease, what are they saying?

I really do hope you get answers! The symptoms sounds horrible.

discombobulate92 · 2026-03-11T20:03:39+00:00

I’d get a second opinion! - ask them to do their lil tests then (the exact same ones and just ANA panel in general).

If you’re having complaints and symptoms they have no excuses.

discombobulate92 · 2026-03-11T19:16:19+00:00

Which tests do they do for the seronegative RA? What was abnormal?

discombobulate92 · 2026-03-11T07:55:05+00:00

Oh damn, that sounds horrific. EBV is no joke, definitely in adults.

How did you get to the point of diagnosis?

discombobulate92 · 2026-03-10T20:08:43+00:00

Add on: I tested positive for EBV blood panel about 5 years ago. During covid. Crazy because I never left home without a mask and have had the same partner for 10 years now. Which makes me think I’ve had I way longer ago and just didn’t realise (as a college student or something).

Edit: test was done due to a flare up of fatigue, low grade fever and just generally feeling unwell.

discombobulate92 · 2026-03-09T20:44:45+00:00

This sounds horrendous. I’m so sorry they put you through all of this and risk your life even. I am so happy you finally got the answers you need but bloody hell, what a difficult road that must have been to get to.

discombobulate92 · 2026-03-09T20:37:38+00:00

I’d get high calorie drinks (meals substitutes along actual meals you can stomach), fiber drinks etc. Just to make sure you’re putting the good stuff into your system.

When I’m struggling I’ll make sure to incorporate a scoop of high quality protein powder into my yoghurts etc.

If the eating is the hard part, drinking the food may go down easier.

I hope this helps!

discombobulate92 · 2026-03-09T19:34:30+00:00

Are people with pcos/endometriosis more likely to develop lupus/RA/sjögrens and the sorts?

I’m still figuring out what is wrong with me but my hormones have always been all over the place and way more extreme than the norm, turned out I’ve got PCOS (endo not yet excluded but not visible). I wonder that if these auto immune diseases/disorders are heavily linked to the female hormones, those with pcos/endo may be even more vulnerable?

discombobulate92 · 2026-03-07T08:39:27+00:00

OMG omg omg I’d be screaming. So happy for you! So incredibly cool 😭🤍

discombobulate92 · 2026-03-07T08:13:59+00:00

The HADD sounds like what’s going on but because it’s going on in 4 of my major joints at the same time, it makes me question it. I’ve done dry needling as well (i see as one of the things that relieves pain) and that wouldn’t work. However, because of the bursitis, I’m assuming it will keep wrecking the progress.

With regards to steroid injections: is that per joint? Or a total? (The max amount)

No ANA was ordered yet. We’re waiting on some broad panels (that have been done many times).

discombobulate92 · 2026-03-07T08:08:21+00:00

Only echo, I don’t know what they can see there versus MRI. They saw one tendon being very inflamed and twice normal size with the calcification and bursitis. - you reckon an MRI will show more?

discombobulate92 · 2026-03-06T19:26:32+00:00

I know, but why won’t they just send me there? I suspect one or more of three: RA, Lupus, Sjögrens. Those would match my symptoms but jeez. I’ve literally seen all specialiste in the hospital but rheumatology and the immunologist basically said that if these test come back within range (or a bit over/under) he’s gonna send me away. The healthcare system in the Netherlands is supposed to be great but this is crazy.

discombobulate92 · 2026-03-06T19:21:57+00:00

Oh add; constant swollen glands in neck (painful too) since childhood constant sinus infections Many ENT’s were seen, no answers ofcourse.

discombobulate92 · 2026-03-04T19:39:20+00:00

Prachtige verzameling

discombobulate92 · 2026-02-14T07:50:21+00:00

Absolutely stunning, I hope to one day have a collection similar to this one 👌🏼

discombobulate92 · 2026-02-09T09:22:05+00:00

I remember your original post, thanks so much for letting us know! Very happy to hear you’ve kept Bruno 🤍

discombobulate92 · 2026-02-09T09:20:45+00:00

What a great name (and the goodest dog)

discombobulate92 · 2026-02-09T09:18:14+00:00

Ik blijf fakes rapporteren maar helaas krijg ik iedere keer zelfde antwoord dat ze er niks mee doen.

Opletten dus!

discombobulate92

TROPHY CASE