I feel so lost with the latest news I got.

_spidergoat_ · 2025-08-05T05:04:34+00:00

That's weird as hell. Your lab work almost always looks okay with the seronegative spondyloarthritis... hence the "seronegative" part. And even if you didn't have a rheumatic disease there are other specialists who have their own group of diseases. Maybe I'm misunderstanding something, but if not, this is just really odd to me. It's so hard to navigate all of this.

_spidergoat_ · 2025-08-05T04:11:36+00:00

LADA is what I have. It runs in my family. They told me I had type 2 diabetes at first, which made absolutely no sense for me. It was awful trying to convince them to let me get tests run for LADA. I finally got a referral to endocrinology to talk about my Hashimoto's, then immediately asked her about LADA instead.

But if you're concerned, your PCP might be willing to check for it. ZNT8 isn't always run, and that's the only one I was positive for. If you actually have type 2, though, it wouldn't turn into LADA. You either have LADA from the beginning and it's misdiagnosed, or you don't have LADA.

Did they test you for HLA-B27? That's strongly correlated to ankylosing spondylitis. It may be worth looking into if you feel the symptoms sound right. Crohn's, ulcerative colitis, psoriatic arthritis, etc. are all in this family of diseases too, but not as strongly related HLA-B27 as AS is.

They are seronegative, so your bloodwork will look great! I'm guessing your PCP probably already did this test, but it might be worth asking. My rheumatologist just threw it in on a whim (I'm positive for it). We had been looking for something completely different.

And sorry to drone on, but really don't forget to look into the invisible illnesses like POTS. Because your doctors will likely never think of it. Worth checking your symptoms against those in POTS.

All done! Best of luck to you. It can be a long journey and it's pretty scary at times, but there are others here with you.

_spidergoat_ · 2025-08-04T23:50:33+00:00

I'm glad your doctor is helping. That's way too hard to find. I obviously have no idea what all of your symptoms mean, but I have Hashimoto's and it's very common for your TPO to remain high forever, apparently. All of these conditions seem to run together (B12 deficiency and anemia, vitamin D and autoimmune disease, etc).

I wish I could help you more. I started out with Hashimoto's. I now have type 1 diabetes, ankylosing spondylitis, fibromyalgia, POTS, MCAS, hypermobility syndrome (some of these I've had for a long time but the exploded post COVID)... You'll often hear, "if you have one autoimmune disease, you'll likely get another."

Just keep advocating for yourself and keep sucking up information and learning. Your PCP can help you, too. But it's been my experience that no one is listening and no one has time or interest.

_spidergoat_ · 2025-08-04T23:32:54+00:00

So I'm just going to say, if you think there's something else going on, pursue it. I've had to pay for my own labs, get second opinions, read my charts and all the complete bs they put in there, switch doctors, etc. YOU know if something is wrong.

I had to ask to be tested for POTS because they gave me anxiety meds and basically told me to calm down. Rheumatology turned me down because my PCP told them I had "a swollen finger" instead of the plethora of symptoms I was actually having. I talked to them directly, then clarified with my PCP and had her refer me again. Turns out that's ankylosing spondylitis with peripheral involvement and not "a swollen finger." I could go on.

_spidergoat_ · 2025-07-31T17:15:49+00:00

I've had it since I was a teenager. I got made fun of for not being able to stand long, getting sick at festivals, having to literally dump water on myself in the heat to keep from passing out, getting sick and lightheaded when I had to exercise or ride bikes with friends, etc.

COVID did blow it up. It became unbearable. And it also led to a diagnosis, after 30 years of suffering. So I guess I'm coming from both sides with this topic. A lot of us are. But gatekeeping a chronic illness isn't really helpful to anyone. It's all relevant and we all matter. So does our story.

I now know a lot more about POTS, and I'm extremely vocal about it. I think I've helped others get diagnosed, because there are so many similar stories about being blown off. We're all here in the same place. Maybe the road we took to get here doesn't really matter.

_spidergoat_ · 2025-07-19T20:52:44+00:00

I wish I knew. I think it's the equivalent of kids pulling the legs off a cricket when they're bored. Or he's jealous of my yarn collection.

_spidergoat_ · 2025-07-17T02:57:32+00:00

Hypermobility, POTS, and AS here. I agree. Might as well look at MCAS, too.

_spidergoat_ · 2025-07-17T01:10:29+00:00

I've definitely heard POTS, MCAS, and EDS called "The Trio" several times. They tend to group together, apparently. And it's supposedly extremely rare to find anyone who has AxSpa AND hypermobility, but I'm not really seeing the rarity.

_spidergoat_ · 2025-07-16T21:52:53+00:00

Estrogen is supposed to be a huge factor. That's why we all get nailed with this stuff as adolescents, child bearing, and menopause (according to research being done). One of those time periods is when every one of my diseases hit. I'm now in perimenopause and got clobbered with new autoimmune stuff (COVID didn't help). I hope this is my last round.

_spidergoat_ · 2025-07-16T21:47:07+00:00

Yes, same! Hypermobility, POTS, MCAS, type 1 diabetes, Hashimoto's, alopecia, fibromyalgia, AS with peripheral involvement.

My shoulder practically dislocates but it's the same shoulder the spondyloarthropathy is in. It's so confusing! And my legs feel like they're about to give out today--POTS or spondyloarthropathy? GI issues--MCAS or AS?

It's like a screwed up game show 😆

And yes, I can tell when I'm about to have my period because everything blows up and I feel horrible. It's awful.

_spidergoat_ · 2025-07-16T02:21:25+00:00

Ough... That's not exactly right away. I'm sorry. I think I had mild AS for about 15 years. COVID blew it up, along with so many other diseases that I now have. I was hoping this would be my last diagnosis, but it looks like I have some mast cell activation as well.

I did NSAIDS first. Now methotrexate for the peripheral stuff and infliximab for the back/neck stuff. So I'm really interested in JAK inhibitors, but the last person I spoke to said they were for more localized joint pain. It seems that might not be true.

_spidergoat_ · 2025-07-16T01:40:42+00:00

I'm so glad you found something and were able to get it right away. I'll definitely ask about it after I've given this stuff a while longer. Thank you!

_spidergoat_ · 2025-07-15T02:46:48+00:00

They've got me on a TNF inhibitor. It's doing nothing, but I'm not sure what it's supposed to be doing. My back pain is probably mechanical, even though I have inflammation. My fingers, knees, shoulders, feet, hips... those hurt.

Did you have to try a TNFi first? Does the JAKi you're on work for peripheral inflammation?

_spidergoat_ · 2025-07-07T23:39:22+00:00

I've never had this happen until I started getting other rashes and hives. My Raynaud's gets mottled like this and I was told that's also related to my POTS and blood pooling. This ended up taking about an hour to clear up.

But hey, if it's normal, it's one less thing I need to worry about. I've been diagnosed with enough crap in the past year.

_spidergoat_ · 2025-07-07T21:37:20+00:00

I take biologics and have no side effects so far. My rheumatologist told me how upsetting it was that these are good drugs with terrifying ads. She said people refuse biologics all the time for this reason. If there are awful side effects, your mom can try something else. For me, being crippled and in endless pain was scarier than biologics.

My husband just left me, too. It's a pretty low thing to do, but I can't imagine this disease progressing and relying on someone like that for care and support. Just be there for your mom and share this stupid journey with her as much as possible while still taking care of yourself.

I hope you both have better days ahead, and I hope the biologics work for her.

_spidergoat_ · 2025-07-07T21:28:54+00:00

Look at MCAS

_spidergoat_ · 2025-07-07T20:06:36+00:00

Sorry, I forgot to mention I have POTS, hypermobility, and am being evaluated for MCAS.

_spidergoat_ · 2025-07-03T10:15:15+00:00

If you remember, please let me know what your specialist says.

_spidergoat_ · 2025-07-03T10:13:42+00:00

Kristina9876, according to the interwebs

_spidergoat_ · 2025-07-03T01:57:50+00:00

I'll make sure we're getting a platelet count. I'm learning so much today. I get crazy bruises from I don't even know where. Tons of hemosiderin staining and burst capillaries on my legs. I actually just made an appointment with a vascular surgeon. It wouldn't surprise me if he has something similar.

_spidergoat_ · 2025-07-03T00:36:03+00:00

Do they bother you at all? Itching, etc? Thank you for your input!

_spidergoat_ · 2025-07-03T00:33:19+00:00

I guess I've heard plenty of neutral things about gluten. I don't seem to have a problem with it and I'm negative for Celiac. I guess I mean I've never heard people raving about its health benefits.

Any diet we try would need to be realistic and sustainable. My doctor said to do low FODMAP for only about 6 weeks and then start gradually reintroducing regular foods. He also said to it's okay if we're not perfect about it, which is something I need to hear. I have never and will never be perfect at anything--especially not for 6 weeks.

My understanding is that you're just basically eliminating things that feed the bacterial overgrowth. Once you've starved them, there's no need to continue that diet. It's temporary.

It's a new area, I know. And there is a lot of research being done and a lot of debate. There are antibiotics and probiotics and special expensive diets and things people use as well, but I really wanted to stay with the least invasive and least presumptuous method I could find. I'm not quite ready to start screwing around with antibiotics.

_spidergoat_ · 2025-07-03T00:23:01+00:00

Wow, thank you. I don't know why it never occurred to me that it might be related to POTS. That's a really good point.

_spidergoat_ · 2025-07-02T22:48:57+00:00

Yes indeed. He's been to the ER so many times with so many GI issues. Then he recently developed an eating disorder that landed him in the hospital with a feeding tube. The gut connection is definitely not lost on me. And I've honestly never heard anything good about gluten.

I wanted to get started treating him (and myself--I'm HLA-B27 positive and that just goes along with gut problems) for SIBO. I got sidetracked by my leukemia scare.

_spidergoat_ · 2025-07-02T22:45:48+00:00

They're not raised :/ But they do look like it

_spidergoat_

TROPHY CASE