u/limeadecandy

Tere

Käisin hiljuti saatekirjaga reumatoloogi juures autoimmuunse põletiku kahtlusega, kuid kahjuks oli see ebameeldiv kogemus. Arst kontrollis minul vaid artriidi sümptomeid (mis mul ei esine ning selgitasin, et on üldse täiesti teise haiguse kahtlus). Siis väitis, et peaksin "õnnelik" olema, et mul artriiti ei esine ja selleks ajaks oli ka vastuvõtt juba läbi.

Kas on soovitusi kuhu pöörduda?

i just came back from a rheumatologist appointment, which i had booked months ago. right off the bat she told me we have too little time to look at anything extensively. i went because i have an unspecified myopathy that's unknown if its genetic or autoimmune. i told her my symptoms and she started screening me for arthritis, not myositis and then told me i should be lucky i don't have arthritis. that was not the reason behind my visit at all, but she told me that myositis is something that neurologists look for (even though my neurologist told me to see a rheumatologist too in between my hospital stays to check if it could be autoimmune). she barely let me speak and each time i tried to get a word in she cut me off. i told her about my 1:320 speckled ANA and she told me because the specific antibody tests were negative i should be happy, even though a very high percentage of myositis cases are seronegative. i was then told that we were out of time and i should see my neurologist for any further questions. i feel extremely frustrated.

warning: this contains discussions about eating disorders including discussions of disordered habits. please don't read if you're triggered by this. stay safe.

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>!i'm not a psychologist, i'm just someone who has recovered from anorexia and is struggling with ocd. i have seen articles discussing this same topic from psychologists, but it seems it's still something that's argued about, so i just want to hear people with ocd and hopefully ocd comorbid with an ed discuss this. before my ed i still suffered from undiagnosed ocd, just with different obsessions and compulsions, and after my ed treatment it was discovered i have ocd, now with new obsessions and compulsions again.!<

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>!many people with ocd also suffer from eating disorders, so the comorbidity rates are very high. similarly, people with eating disorders exhibit a lot of ocd symptoms, but may not be diagnosed due to the fact that different types of eating disorders are specific diagnoses already. eating disorders come with obsessions , avoidance of what's believed to be "harmful" (fear food or weight gain), compulsions and other behavioral changes.!<

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>!here's a list of common ed obsessions and compulsions:!<

>!- calorie counting!<

>!- fear of weight gain!<

>!- checking everything for calories/macros, refusing to eat items without nutritional information displayed!<

>!- compensating for consumed calories through exercise!<

>!- purging!<

>!- developing fear foods!<

>!- "clean" eating!<

>!- eating at specific times!<

>!- fasting!<

>!- weighing out every food item!<

>!- avoiding eating in public!<

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>!the treatment for eating disorders and ocd are also similar. treatment includes CBT, exposure therapy (through eating, forced rest and hiding nutritional information) and antidepressants/anxiety medication.!<

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>!this is my reasoning for why i believe it could be linked, but i want to hear other people's perspectives.!<

i hate questioning if i deserve to call myself "disabled". i have a myopathy that makes every day a living hell. i tried applying for disability because i'm not able to function properly in my day-to-day life and multiple doctors have confirmed that in my medical records. it got denied due to them "not seeing enough reason to classify me as disabled" (which, in reality, was because country is running out of money and they're choosing to target disabled people for funds because they know most of us can't file an objection). i was deemed mostly unable to work, though.

i can't even get a mobility aid without being perscribed it, because having a muscle wasting disease means i have to keep my muscles in use for as long as possible or they'll deteriorate faster. i've gone past the point of being able to properly walk after a severe flare, but i have to wait months until i can be seen by a specialist again.

it feels like i don't deserve to call myself disabled, because i got denied my application and i also don't have mobility aids so people can see i'm disabled. i have literally nothing but my diagnosis to prove it. i know i am disabled because my body has deteriorated to the point i'm too weak and in too much pain to do anything, but i still sometimes wonder if i can even call myself that.

Hello

I'm currently in the process of screening for the cause of my myopathy, I just have ANA 1:320 speckled but no specific antibodies + highly elevated CK. One of the strangest symptoms I have is I feel like my muscles (mainly in my calves) are tearing apart from the inside. It's accompanied by severe pain, straining, cramping and spasming, happens for no reason. I don't exercise outside of what my physical therapist has shown me because it's too painful and I end up becoming sick. Can this be a symptom of anything specific that I should point out to my rheumatologist next week?

i was due to go back into the hospital today for further testing after waiting for 6 months, but last week i got a call explaining that they ran out beds and they now want me back at the end of september. my symptoms have only gotten worse since my last stay and even right now i'm laying in bed, hardly able to move, after walking a bit on saturday. i'm in constant weekly flare-ups, my muscles twitch and feel like they're tearing apart from the inside even though i'm not physically active due to how unwell even the slightest bit of activity makes me. the pain is always accompanied by fevers and then afterwards i suffer from muscle tremors, full-body weakness and fatigue. i'm in a constant state of malaise and pain if i'm not feeling severely ill at the moment. i haven't had a day where i've felt well in months. doing just about anything takes days to recover from.

back in the hospital they did blood tests on me which revealed i have an ANA titer of 1:320 with a speckled pattern and a CK of 4800, EMG revealed muscle damage and MRI showed inflammation. my autoimmune antibody tests came back negative. i know there's a likelyhood of it being either seronegative or localized, so i was hoping that this time i'd be able to do a muscle biopsy and physical evaluations. i know the results for it would take a while to get back too, so it hurts even more knowing i have to wait so long to maybe get answers. every day just feels like i'm slowly wasting away trapped inside my own deteriorating body with no clue what to do anymore. my will to live has disappeared entirely.

I'm from a small country in Europe. Monster High has been my special interest my whole life as an autistic person and now that I'm an adult with money I can restart collecting. Dolls are already expensive in retailers here (G3 dolls are 60 euros for core dolls), while the wages are ridiculously low. Thankfully I at least have Amazon, where I can get the dolls for an okay price.

I have been wanting to buy Mattel Creations exclusive releases for ages and I felt horrible when Haunt Couture released and I found out that I could never have even gotten it because Mattel Creations doesn't ship to my country. The same sadness was felt whenever they released a Fang Vote or other exclusive dolls, because I don't want to buy through scalpers either. I felt devastated not getting Fang Vote Jinafire too.

I was looking forward to the Spelldon x Valentine release, because I'm a queer person and it means so much to me seeing proud queer characters represented in media (Unfortunately Mattel is also censoring it this time it seems 🫠). I don't get why Mattel chose to have it released on Mattel Creations when there's so many fans who cannot use the site at all? Why not make the site international? The Fang-Club pass already says it's available for the EU, but most EU countries are excluded from sales. It feels so unfair.

Hi

I have positive ANA 1:320 coarse speckled. I found it out at my previous hospital stay where I was diagnosed with an unspecified myopathy by a neurologist and told I will have further testing done in June. My genetic panel revealed no genetic cause of the myopathy. My autoimmune panel at the time came back negative, but my symptoms have only worsened since then. I experience day-to-day limited mobility, muscle weakness and pain, but during flare-ups I get a fever, extreme fatigue to the point I can't get out of bed, swelling and rashes. The aftermath of the flare-ups causes me worse mobility, weakness and pain. The flare-ups happen weekly at this point.

Is it possible that despite my inital negative panel I might still have an autoimmune disease?

Tere

Mul esineb progresseeruv sidekoehaigus, mistõttu olen pikalt vaevlenud hullude valude, liikumisvaeguste, jms all. Mul on Terviseportaalis anamneesides kirjas, kuidas olen vastuvõtudel nutnud, sest haigusest tekkinud vaegused on mu igapäeva tegevusi nii tugevalt piiranud, et elutahe on ka kadunud. Taotlesin hiljuti töövõimehindamist ja puue määramist, sain osalise töövõime (kuigi tööd tehes tekib oluline ägestumine, mis tekitab ka palaviku ja muu). Puue ei määratud, sest ei leita, et "on igapäeva elus piisavalt takistusi". Ma ei mõista, kuidas saab üldse seda väita?

Hello!

I want to make a cosplay for a character that has cake piping decorations around her cage skirt. I cannot find a silicone mold with piping decorations large enough for a life size version, so I wanna pipe them myself. I need to use foam clay for the project. Is there a way to make the foam clay consistency more liquid for piping? I don't want to risk ruining my batch. I use Cosplayshop air dry foam clay, but it might be too dense for piping.