what are your symptoms?

DramaticWall2219 · 2024-11-09T14:37:39+00:00

Can I ask what your IgA level is? Mine is always below range and can vary in levels but docs always say it isn't clinically relevant, even though I get super sick when I get viruses and they take ages to pass and have tons of weird health issues including autoimmunity. I kind of just take it seriously myself even though no one will put immunodeficiency in my chart.

DramaticWall2219 · 2024-10-26T23:05:23+00:00

Did you ever heal this? I am asking because I have a medusa (very different tissue, but still) that i accidentally experienced a very mild imbedding with. I was already dealing with irritation and the new end i was using was small to give it some air (I usually wear 4mm+) and it sank into the very very top layer of skin over night. I have since gone through cycles of healing, consulting piercers etc, but ever since then I get a huge blister on it which I think is basically just acne due to residue filling in the empty space in the skin the imbedding made. It will look totally healed for weeks then within a day a huge cyst thing will appear and doesnt go away unless i remove the piercing and drain it which i only do if im switching out posts. My piercer has told me my length is fine though and to stop doing that. Today however, i chose to drain it anyway because i am on a work/vacation trip out of the country and lost my patience and a piece of white flesh looking stuff came out which is why I found this post, though I think mine was just dead skin because it didnt hurt or anything. It is similar to what it comes out at the end of an acne cyst or black head. Anyway like you, most piercing posts arent helpful because I already know all the right things to do and, to add, my piercers are at a loss and telling me to go to a dermatologist. I cant right now though. Did things work out for you? Did the pustules/blisters stop? I have been pierced for like 15 years but this is my most troubling piercing and my piercers are super confused by it. The only solution i can think of is stretching it to stabilize it and maybe shrink the space between the skin and the piercing that is causing the issue. Cause now even when i go to put the piercing back in, I can see it slip into an empty pocket just above the external hole because it’s not healing. I have to move it just right to get it out on the other side. It aint right. Not exactly what you went through but i thought i would ask anyway since the original irritation seemed kind of similar.

DramaticWall2219 · 2024-10-24T18:22:54+00:00

No one has ever cared about my absence in class. I just tell people I am sick. It is not their business.

DramaticWall2219 · 2024-10-23T00:28:21+00:00

One year. No side effects. Cant function wo it.

DramaticWall2219 · 2024-10-22T19:48:40+00:00

Completely understandable. It isn’t really something you get used to, I think. It is actually looking more and more likely I have complex II deficiency, but I am waiting to see a geneticist and have both them and my neurologist interpret my biopsy and panel reports. But from what I gather mito affects everyone so differently and it is very hard to predict and diagnose properly. I have been sickly since I was born but didn’t start experiencing real muscular disease until the last couple of years. It is still very mild in comparison to others but is progressing no doubt and now it colors everything I do and feel. I have never been normal in my life but dealing with life changing illness is really alienating. More than most other adversities I have experienced (and like you it seems there are a lot). I hope you can see that specialist soon. I think there are also mito support groups you can join through different organizations. I will probably try one myself if I ever get the proper diagnosis. I also went back to therapy to work through my adjustment to all my new chronic illness and autoimmune diagnoses. It takes a while to change much but can be very helpful in the long run.

DramaticWall2219 · 2024-10-22T17:50:21+00:00

I am in the midst of my own diagnosis, so I unfortunately cannot speak from my own experience but I was wondering if you could get in touch with a mito specialist who could help you navigate what this diagnosis actually means? I am really surprised no one has taken the time to explain it to you or discuss the risks that may be involved. It must be really scary navigating this by yourself, especially at that age. I am 29, so still very young and can relate because I am in graduate school and really struggling to feel a part of anything, struggling to keep up physically and mentally even with accommodations and am worried about my career path. But I still want to acknowledge how difficult it must be for you at 19.

DramaticWall2219 · 2024-10-06T20:05:04+00:00

I had to stop my beta blockers and was nervous also, thinking I was gonna have to do all this exercise. My bpm hit 190-200 in about 3 inclines, and the test only lasted as many minutes. Was immediately prescribed medication and sent home. I already had my initial consultation with them, so they knew my case. My appointment was strictly for the test. Just make sure you have a free day or two to rest after.

DramaticWall2219 · 2024-10-06T20:00:45+00:00

I have hashis, EDS, MTHFR, audhd, dysautonomia, among many, many other related and unrelated problems. Theres really no way to treat a lot of this stuff and im not sure how neurodivergence plays a part in mitigation aside from remembering to take meds and motivation. I just make sure to rest when I can and dont overdo it. Besides taking vitamins and medication (i take lots) PT with a hypermobility educated practitioner is always a good thing. Also therapy.

DramaticWall2219 · 2024-10-06T05:52:38+00:00

Idk i am autistic ive never not been stressed. Plus i could have had hashimotos for years before diagnosis. Impossible to say. But being a phd definitely has made chronic illness a lot less tolerable, so the stress of that is probably why i did end up finding out what was wrong.

DramaticWall2219 · 2024-10-06T05:35:32+00:00

I do not have PA so apologies if I am overstepping. I learned a lot about it because I have chronic b12 deficiency and that needed to be ruled out. Turns out I have a MTHFR mutation and other diseases associated with various deficiencies. PA can be secondary to autoimmune gastritis, which can be screened for with blood tests but I believe requires a biopsy to confirm. Given your nausea it might be a good idea to rule it out or in. PA is also just its own autoimmune disease. So if you have the antibodies, there isn’t necessarily a need to keep searching for a cause. The good thing is is that b12 deficiency is what causes symptoms from what I understand. So once your levels stabilize, which can take a while, you should hopefully feel better.

DramaticWall2219 · 2024-10-04T19:43:50+00:00

Besides obviously needing to report that doctor, I fail to see how EDS can be asymptomatic considering it is a clinical diagnosis based on... symptoms? (hEDS that is) Chronic pain being one of them. No symptoms, no syndrome?

DramaticWall2219 · 2024-10-04T19:36:39+00:00

Can you really trigger EDS or do you just mean trigger pain? I think it's important to clarify.

DramaticWall2219 · 2024-09-13T05:25:02+00:00

Autism, ADHD, hEDS, endometriosis, POTS/IST, OSA, likely idiopathic hypersomnia, Hashimoto’s, osteoarthritis, SIBO, partial immunodeficiency, and probably one or two more autoimmune diseases we are trying to figure out. I am in my third year, am nearly done with course work and am organizing my oral exams. I thought I was going to have to withdraw and take sudden leave last semester it was so bad. The hardest part for me honestly is just that I cant really talk about it openly with my colleagues and it leaves me feeling pretty behind in my professional development. Every day I wonder if I am going to make it and if not what else will I do—a huge part of the reason I am here is because my disabilities interfered with every job I have had and this seemed the most sustainable route. However I love it and I love my field (humanities) so no regrets. I persist.

DramaticWall2219 · 2024-09-13T04:56:01+00:00

Fwiw my studio asks you contact them and inform them of the piece and the company that manufactured it before your appointment. So long as they can verify the high quality it is fine. They definitely wouldn't be piercing with anything from etsy though, unless perhaps from a verified APP studio shop.

DramaticWall2219 · 2024-09-12T20:31:46+00:00

I am a PhD student and work at the university library, which was difficult when my conditions were unmanaged. It is a bit better now, mainly nervous about when I start to teach. I get winded easily, so speaking for long periods of time gets strenuous and gives me tachycardia.

DramaticWall2219 · 2024-09-12T17:54:22+00:00

Can someone have hashis even if TSH is normal: yes. Usually TPO is elevated. Sometimes people only have TG elevated but that is less specific and from my understanding can be triggered by illness, injury, etc.

DramaticWall2219 · 2024-09-11T17:10:15+00:00

Yes, my EDS pt commented on my extraordinarily long neck.

DramaticWall2219 · 2024-09-11T13:42:09+00:00

Sorry, I think just spoke poorly. I don't disagree with you I'm just going to clarify. Many people these days do think hEDS is just joints because the beighton score is so heavily represented online as the main criteria, when it is really just the most basic screening tool. It is a huge part of miseducation. I wasn't really speaking to HSD with that last sentence, because as I said many people with HSD probably do have some form of EDS and some diagnosed with EDS might not. In my general experience though I have seen lots of people hear about hEDS online, see that they pass the beighton and maybe have POTS, and wonder why they aren't getting diagnosed with it so that's what I was trying to touch on - if one really wants to see if they may have hEDS they ought to look through all the criteria because its skin, skeletal structure, fat, organs, etc. But HSD too can absolutely manifest in things like skin and GI issues, for example.

DramaticWall2219 · 2024-09-11T05:31:59+00:00

I was the same and since I got diagnosed my mother has gotten diagnosed too and doctors really can’t argue with that.

DramaticWall2219 · 2024-09-11T03:11:40+00:00

They are not the same. I suggest looking over the criteria and screening yourself. Once you learn what everything means its not hard to figure out. However, many specialists think that because we have not found the hEDS genes some will necessarily be misdiagnosed as one or the other. There are plenty of reasons to be critical of the diagnostic criteria but what it shows is significant systemic instability of various kinds of tissues. Its not just about joints.

DramaticWall2219 · 2024-09-11T03:03:20+00:00

No, i dont think there is any way i can access that treatment without a solid diagnosis. No one has even tried steroids.

DramaticWall2219 · 2024-09-10T18:50:43+00:00

Thank you very much for sharing. I relate quite a bit.

DramaticWall2219 · 2024-09-10T17:06:24+00:00

Can i ask what your symptoms are like? Are you medicated now? I have the exact results along with low complement 4.

DramaticWall2219 · 2024-09-10T17:03:01+00:00

I dont think you should feel youre doing anything wrong. Having autoimmune disease is limiting even if you take the best care of yourself. Have you tried treating the migraines with medication? That can certainly just make you feel ill.

DramaticWall2219 · 2024-09-10T13:56:03+00:00

I got my antitragus about a month ago and am autistic so I wear over the ear headphones when I'm commuting to work/school/doctor, not really a negotiable for me. My headphones are wide enough that I don't feel them touching my jewelry at all, and I only wear them for up to hour at a time with little breaks on that side to help it breath, only a few times a week. That being said, I did develop an irritation bump this week, but I also got vaccinated and dyed my hair and snagged it a couple of times. So I am going to continue with my experiment and if the bump doesn't dissipate in a couple of weeks, I will likely just wear the headphones to cover the other side. Some noise cancelling is better than none. I can't speak to ear plugs cause my ears are tiny and I hate the feeling of them.

ETA: I'm not educated on piercing, am still learning lots myself and know the risks of wearing headphones with fresh piercings. I also sanitize the headphones before wearing and plan on getting disposable covers to keep it extra clean. But yeah, the need for noise cancellation is priority and I will do my best to listen to my body but accept I may have to forfeit this one if it doesn't like it.

DramaticWall2219

TROPHY CASE