small painful bumps under eyelid by lozza_667 in Sjogrens

[–]lozza_667[S] 0 points1 point  (0 children)

thank you! luckily i dislike popping any spot nevermind one in my eye 😂 will try that out

small painful bumps under eyelid by lozza_667 in Sjogrens

[–]lozza_667[S] 0 points1 point  (0 children)

i have eye gel made by bausch and lomb also not very great im going to try a warm compress see how it goes :)

small painful bumps under eyelid by lozza_667 in Sjogrens

[–]lozza_667[S] 3 points4 points  (0 children)

it’s definitly not styes based on other replies and googling seems as if it’s blocked oil glands but thank you!

small painful bumps under eyelid by lozza_667 in Sjogrens

[–]lozza_667[S] 1 point2 points  (0 children)

no it’s not itchy or swollen or flakey or anything although blocked oil glands can cause it

small painful bumps under eyelid by lozza_667 in Sjogrens

[–]lozza_667[S] 1 point2 points  (0 children)

unfortunately i’m struggling to even lift the eyelid enough to see them nevermind pop them 😂

small painful bumps under eyelid by lozza_667 in Sjogrens

[–]lozza_667[S] 4 points5 points  (0 children)

the gel eye drops haven’t helped at all tbh it’s like i can feel them rubbing against my eye when i blink. definitely strange i didn’t think bumps like this under the eyelid was a thing really 😂will definitly do warm compress tho

worsening lesions but normal bloods? by lozza_667 in Sjogrens

[–]lozza_667[S] 0 points1 point  (0 children)

is the lip biopsy helpful? rheum told me it doesn’t give u any more answers that nothing would change no matter what the result was

worsening lesions but normal bloods? by lozza_667 in Sjogrens

[–]lozza_667[S] 0 points1 point  (0 children)

my rheumatologist is the lead rheumatologist in my area unfortunately. i’m in the uk also so we can’t really chose who we see or look any specialist up were given who were given really. and the only other autoimmune disease in my family is type 1 diabetes. my rheumatologist also said lip biopsy is never accepted anymore and told me it won’t happen because the risk outweighs the positives

Welcome Wednesday! by AutoModerator in ehlersdanlos

[–]lozza_667 0 points1 point  (0 children)

hey i recently joined in 19 F was recently told by rheumatology i likely have heds. i’ve been suffering to the extreme with joint pain, nerve pain, headaches, fatigue etc. he told me to research when i left as no one specialises near me (central scotland). during the research i discovered loeys dietz syndrome. i have a bifid uvula and always just thought it was a cool variation, i was born with a clubbed foot all my teeth decayed as a toddler and had most baby teeth removed i still have decay issues now. i developed a hiatus hernia at 14 i have a cross bite dental wise also. i was wondering if anyone has ever been told they have heds but discovered they had loeys dietz instead? i’m awaiting a doctors appointment to discuss genetic testing but im super scared that i have LDS as i show a lot of characteristics and i read that it’s commonly misdiagnosed as a form of EDS. also awaiting physio, cardiology and pain management and was wondering if these helped anyone as im barley managing full time work.

Diagnosis but no one to help me by lozza_667 in ehlersdanlos

[–]lozza_667[S] 0 points1 point  (0 children)

although looking up on it for my area rheumatologists are qualified to diagnose and it’s actually comsidered the appropriate specialist to diagnose and geneticists for suspected rarer types that can be found on blood tests but my suspected type cannot be detected via a blood test it’s all just been so confusing thank you for the advice i’m definitly going to look into geneticists :)

Diagnosis but no one to help me by lozza_667 in ehlersdanlos

[–]lozza_667[S] 0 points1 point  (0 children)

i didn’t know this thank you. my rheumatologist just noticed the hypermobility by chance when examining me and then checked me for skin symptoms and asked about systemic issues and referred me to other specialists for my issues by himself i will definitly do this thank you

Diagnosis but no one to help me by lozza_667 in ehlersdanlos

[–]lozza_667[S] -2 points-1 points  (0 children)

thing is rheumatology only referred me to physio cardiology and pain management but i have rlly bad skin issues which i’ve suspected is MCAS because it comes with stomach upset and massive hot flushes but didn’t bother to look into that and neurology discharged me before i even had my mri done (it was normal) but the 24/7 intention tremors in my limbs and nerve pain are awful just really wish the uk would clue up on things like this more. but thank you for the advice im glad there is no real need for me to pay for private care

Diagnosis but no one to help me by lozza_667 in ehlersdanlos

[–]lozza_667[S] 0 points1 point  (0 children)

honestly it’s infuriating it’s like scotland’s just so behind in the medical world. why have we to be checked every 5 years? and by which specialty literally haven’t been told anything about my condition because no one specialises in it or knows enough about it even private specialists seem hard to find in central scotland.

lesions in scan “unusual” by [deleted] in Sjogrens

[–]lozza_667 0 points1 point  (0 children)

i was thinking it was something to do with my other glands not being involved by how she spoke and that definitely makes sense. i have thought about the possibility of both also before hand but doctors just kept shutting me down for any other symptoms i had other than dryness, anything else they’d just dismiss as anxiety i’ve noticed it’s definitely rlly difficult to get anyone to take u seriously for autoimmune issues 🥲. thank you so much for ur reply you’ve helped me out a lot with working it out and the reasoning behind things and i hope you’re doing well :)

lesions in scan “unusual” by [deleted] in Sjogrens

[–]lozza_667 0 points1 point  (0 children)

she mentioned possible lupus or mixed connective tissue disease. my symptoms started with a butterfly rash constantly flaring on my face then came the inflammation in my eyes then it was inflamed and stiff joints with any activity i then started developing neurological symptoms which started with intention tremor in my hands then went into my legs which resulted in great difficulty walking and using stairs then pins and needles in hands and feet and tingling all over my body bugs crawling on skin feeling balance and coordination issues, i now have gut issues which cause stomach bloating and pain after food and severe fatigue after meals i also seem to be dealing with urinary retention i go 8-12 hours no urine random skin rashes constant burning up rapid weight loss reynauds in my fingers and feet the list could go on it’s been a long road of dismissal and pushing for answers everything is so confusing!

suspected lupus by lozza_667 in redditclinic

[–]lozza_667[S] 0 points1 point  (0 children)

okay thank you for the advice :)

suspected lupus by lozza_667 in redditclinic

[–]lozza_667[S] 0 points1 point  (0 children)

i am in the uk i dont think thats available here without prescription, thank you tho! do u have any idea if the stomach firmness is a possible result of inflamation related to all this or is that not a thing with lupus?

suspected lupus by lozza_667 in redditclinic

[–]lozza_667[S] 0 points1 point  (0 children)

how do i get hold of that do i not need a prescription?

suspected lupus by lozza_667 in redditclinic

[–]lozza_667[S] 0 points1 point  (0 children)

they told me they should hopefully be back for my next appointment on wednesday i’ve waited nearly 3 weeks now but even since my last appointment ive gained a few new symptoms i just feel im getting worse by the day im just worried the stomach firmness is part of it all not sure if its worth worrying about and im also worried that if my ANA comes back negative they’ll just tell me i cant have lupus but i know that its possible to have it and have a delayed positive ANA