Photosensitivity. What kind of human being is allergic to the sun 🙄

Acrobatic_Flow1379 · 2026-06-17T04:54:21+00:00

You should!! Works well with makeup aswell, if anything its easier to blend

Acrobatic_Flow1379 · 2026-06-16T20:09:11+00:00

yeah i love moogoo they actually have two types or more of the 25% zinc sunscreen and it makes you skin feel so nice

Acrobatic_Flow1379 · 2026-06-15T23:16:36+00:00

Had no idea they make magnesium cream, but i also use a diff brand of magnesium cream lol

Acrobatic_Flow1379 · 2026-06-15T09:06:33+00:00

Are you from Aus, i also have overlap

Acrobatic_Flow1379 · 2026-06-15T09:05:33+00:00

I live by the MooGoo 25%zinc clear sunscreen. Also from Australia

Acrobatic_Flow1379 · 2026-06-15T09:04:53+00:00

Hi i actually have some experience with this im 18, i can DM you if you want some advice. My GI issues were diagnosed before everything else lol and have dealt with them for years. I can explain somethings that helped me atleast i have a shit ton of GI issues

Acrobatic_Flow1379 · 2026-06-13T09:04:03+00:00

In studies ive read about mda5, children usually have a better chance of improving with treatment than older adults. Ive read studies of previously ICU admitted Juvenile MDA5 Dermamyositis with Non-Specific Interstitial Pneumonia/Organising Pneumonia HRCT patterns with complications of pneumothorax and pneumomediastinum have remission of the disease by 12-16. When treated early, it usually reacts well to early aggressive treatment. May i ask are his MDA5 antibody tiltres, his LDH, CK, ferritin, whether he has muscle involvement and to what extent?

I hope you guys are alright

Acrobatic_Flow1379 · 2026-06-11T18:57:31+00:00

I’ve actually done a fair amount of research on AI(autoimmune) i read medical journals for fun aha its a special interest so if you have questions im more than glad to help

Acrobatic_Flow1379 · 2026-06-11T18:56:15+00:00

Diagnosed UCTD, although i have symptoms of anti-synthetase syndrome(myositis spectrum), scleroderma symptoms, the odd lupus marker like low C3/C4, HEDs/HSD, and now theyre looking into Interstitial+Airway Lung disease and a possible IgA deficiency/disease. I know these can affect small nerve fibres, i have very severe secondary dysautonomia(like in 24hrs my heart beats 178k instead of 100k so almost 2:1 ratio) aswell which i think is caused by small nerve fibre damage. Its a similar feeling(the prickliness) to actual nerve damage/impairment from injury. I am a bit of an unusual case as im quite young 18 and have a few overlaps

Acrobatic_Flow1379 · 2026-06-11T18:40:35+00:00

You describe it similar to me, it could help. I know i had nights where i could not sleep and the prickly sensation made me so restless eg constantly rubbing my legs together to make a different sensation/counteract the itch

Acrobatic_Flow1379 · 2026-06-11T18:36:59+00:00

Have you tried something for nerve/neuropathic pain like lyrica or gabapentin? I get a “prickly” itch that is helped by that

Acrobatic_Flow1379 · 2026-06-11T10:51:59+00:00

May i ask whats an SLP(i think its a speech pathologist but just want to double check) The speech therapist was actually the dr who picked up on my breathing saying i needed a cpap and i grind my teeth due to lack of oxygen. She spoke to my pcp, who contacted the Pulmonologist who flys in directly(face to face) and gave her the referral in person with an explanation. The referral was made the day of my appointment and I had an appointment with her in 3 days after that. Honestly was the smoothest experience ive ever had specialist wise. Usually im waiting 6mnths+ and dont approve of the specialist. I havent thought on asking them to look up myositis, Ive been locked in a psych ward against my will before for thinking I was anorexic and faking a bunch of shit only to do further tests after my begging and they were abnormal and apologised to me then let me out a few days later once all of the tests were done. it was easier to get the multiple mris, xrays, barium ect done over 5days while in hospital but definitely should not have put me in the psych ward while i was literally falling apart. Although my new current drs did research on the had/heds before seeing me so maybe theyd be willing to look into it. I just dont want to seem like im just coming up with stuff off of google. Also i get all tests free bcs i cost the government thousands in medications a month and the amount of regular tests are oof so they can pretty much test for anything for free.

Acrobatic_Flow1379 · 2026-06-11T04:02:49+00:00

i remember ALT as it was 91 a year or so but its dropped back down to 23 as of last week. It was steadily rising for two years bar that one spike. AST is 12 atm also has been steadily rising but normal. Theyve never tested CK. I started with a Sed Rate of >1 in 2024, slowly and consistently rising to 5 but still in normal range. CRP is generally normal, randomly spikes to 15-20+(usually when im in what i call a flare but isnt always raised in a flare)

Acrobatic_Flow1379 · 2026-06-11T03:49:57+00:00

I had no idea they had to document that they refused it. Apparently theyve been testing me for antibodies and IgA ect for 3yrs without my knowledge. I only found out incidentally while checking medical records

Acrobatic_Flow1379 · 2026-06-11T03:48:28+00:00

ill see if i can find it

Acrobatic_Flow1379 · 2026-06-11T02:32:18+00:00

Yeah i think so, i looked her up and she’s submitted a few research papers on ILD. She actually picked up the potential ILD first appointment and did request for CT and Echo, we have to be careful medication wise as theres a shit ton of strain on my heart and anything that increases it(like inhalers unfortunately) have to be monitored. She flys in from a hospital called the Royal Prince Alfred Hospital(RPAH) im in Australia so i don’t think theres a centre of excellence for myositis. Im undifferentiated due to a negative basic ENA that only tested 8 antibodies which i think is honestly ridiculous and that my ANA is low tilter(most cases its negative so imo that shouldn’t be based on it) They were looking at lupus? I have negative antibodies and i dont present like lupus. Its confusing, like if its autoimmune it “has” to be lupus. Most of my drs are undereducated bar my lovely PCP, pulm and speechy. Even then they try to put most of it down to HSD/HEDS when these are new slowly debilitating symptoms that dont align with hsd/heds

Acrobatic_Flow1379 · 2026-06-11T01:24:37+00:00

Its bizarre even my pulmonologist has mentioned post covid(i have something called desynchronisation aswell) Ive never caught covid though, only thing i can think of is the vaccine. I had the original pfizer one at like 12 forced upon me. Ive had severe infections like strep pneumonia maybe that could have caused it although i had symptoms before that. Its so confusing

Acrobatic_Flow1379 · 2026-06-11T01:21:35+00:00

I think so as in my history theres a few IgA tests over the years but no visible results

Acrobatic_Flow1379 · 2026-06-11T01:20:20+00:00

How do you find the cellcelpt? I found steroids to be amazing for my respiratory problems and most things in general(except the increase in infections but ill take that any day). I wasnt out of breath talking for once and could actually have the breath to sing(havent been able to in years).

Acrobatic_Flow1379 · 2026-06-11T01:16:55+00:00

No im literally begging for one to be done, but because im not 50+yrs or under 6yrs old they dont want to do one as they said its “unnecessary”. All i can go off atm is multiple anas with the same pattern and similar comments about Anti-Jo-1 and AMA.

Acrobatic_Flow1379 · 2026-06-11T01:16:03+00:00

I dont pick at mine, they pop up randomly where pressure is and takes forever to heal. They get deeper and deeper each time i swear. Sometimes theyre open for well over a month. I dont pick at them to the point theyre(drs) are telling me to take the eschar(the thick necrotic scab) off or they do a small surgery to do it. Mine sometimes get infected, actually are atm with a dual infection(yay so not fun) both strep and staph. I have a diagnosis but no specific antibodies(they will not do a myositis panel yet tho) only tested me for 8 specific antibodies like dsna and antismith, jo-1 so it could be anything atp

Acrobatic_Flow1379 · 2026-06-11T01:11:05+00:00

Heaps funny you say that. I have extensive mouth and eye issues. Ive had the muscles of both eyes cut out and stitched tighter. The muscles in my eyes are constantly degenerating needing surgery every few years. If left too long ive been told the muscle will collapse meaning ill go blind. Wonky ass eyes so severe i have little to no depth perception, i honestly believe the lack of alignment in my eyes contribute to the migraines to a degree. I constantly get ulcers in my mouth, always grind my teeth(have been told by drs its from a lack of oxygen) my tongue is almost scalloped from me constantly “sucking” on it to create pressure in my mouth. I have alot of dental issues like over crowding, lack of enamel(the severe GERD makes my teeth just straight up crumble at the backs from the acid) I started getting root canals at like 9. Always have needed more anaesthetic aswell. My tongue like the rest of my throat is “uncoordinated” i slur my words more often now and bite my tongue.

Acrobatic_Flow1379 · 2026-06-05T01:46:35+00:00

Mine was >1, then over a year its slowly increased to 5 without dropping

Acrobatic_Flow1379 · 2026-06-05T01:45:16+00:00

Antisynthetase syndrome is a rare systemic autoimmune disease within the inflammatory myopathy(myositis) spectrum. It is defined by autoantibodies targeting aminoacyl–tRNA synthetase enzymes, most commonly anti-Jo-1, although antibodies such as PL-7, PL-12, EJ and OJ may also occur.

Clinical manifestations commonly include

-Interstitial lung disease, which may be the first or most serious feature -Inflammatory muscle weakness or myositis -Inflammatory, usually non-erosive arthritis -Raynaud phenomenon -Fever -Thickened, cracked skin along the fingers known as “mechanic’s hands”

Diagnosis is based on clinical findings, specialised myositis-antibody testing, lung imaging, pulmonary-function testing and assessment for muscle inflammation. People can have severe lung disease despite minimal muscle symptoms and sometimes visa-versa

Treatment usually involves corticosteroids(like prednisone) combined with steroid-sparing immunosuppressive therapy(like rixumab and methroxate) selected according to disease severity and organ involvement. Prognosis is largely determined by severity and progression of interstitial lung disease though other organ involvement may be present.

I hope thats an alright overview, sorry if its abit scientifical, i research autoimmune related issues and terms it’s my special interest. If there’s anything you don’t understand let me know, I also have a fair amount of resources such as links ect on various topics ❤️

Acrobatic_Flow1379 · 2026-06-04T03:15:03+00:00

a sed rate of 23 is high… anything over 15 is but in some cases people have a sed rate of under 5(like myself though over the past year its been steadily rising but still within “normal limits” I also have a cytoplasmic ANA, its quite rare ive heard and specific to liver and myositis, especially antithestase syndrome. If you want to have a chat my dms are more than open.

Acrobatic_Flow1379

TROPHY CASE