#undifferentiated connective tissues disease

[christinziogrimmace]

Well I know there’s gotta be some people in the disability community on here, just wondering how many that are active that have a rheumatic disease (UCTD, Lupus, Rheumatoid Arthritis, Sjörgen, etc)

Hi I have Undifferentiated Connective Tissue Disease (UCTD) I found out just before the panini hit, I’m on hydroxycholorquine which helps me manage my symptoms *most* of the time but with the weather getting cold I’ve been experiencing a lot of pain in my leg joints especially my left knee. It sucks. I can only handle doing stuff on my feet for so long before I need to sit or lay down at this point.

[sleepycatmama]

I hate hate hate feeling the arthritic pain in my right shoulder, trying to keep sewing but feeling the pain making it harder and harder. I want to craft! I feel like I'm losing myself when I can't.

[schizoaffectively]

So yesterday's geneticist visit went very well! I got genetic testing for connective tissue things, including EDS. However, I don't meet criteria for Hypermobile EDS because of my med for rheumatic conditions working. And due to lack of known family history of any EDS, it's not high on their expectations for the results.

I am indeed very hypermobile as the geneticist said after examining me, and she ordered an ECG/EKG and an echocardiogram. I got the ECG done there, and the echocardiogram will be done at a later date, since that was more of a referral I think?

Anyways, they think it might be rheumatic connective tissue stuff rather than a genetic cause. I have to wait until around the end of August for my genetic results, though.

Also, I apparently got a dx of Undifferentiated Connective Tissue Disease (UCTD)! So that's interesting!

[thetimetravelinglady]

Was talking with the spouse about chronic pain and finally feel like I adequately explained part of my frustration: "The human body has an infinite capacity to fuck up." However much my body has already thrown at me with my illness(es), it can still manage to take me by surprise.

[vvulpes]

ok y'all i'm gonna miss a class i really Did Not want to miss so i can go to my doctors appt, please wish me luck in getting results

[mohannadadham]

Urgent Help Dalia's family Evacuate & Treat her parents

Plz Read Dr dalia Story:

Hello World , it's Dalia. Please read this as if I'm a member of your family . maybe your sister, daughter or a friend and as if my family who's under death now is yours.

My name is Dalia and this is my story. I am 27 years old, a laboratory doctor, and a graphic and website designer, also a private lessons teacher. Before October 7th, I had a beautiful and peaceful life with my family. I had ambition and many dreams. I was working in Al Shifa Laboratory and had an office for my design work as well as private student groups. But now everything has changed. What happened to us is a nightmare. I lost everything at once, my home and my work in all its aspects. We are repeatedly displaced between danger and death.

I am the older sister and my family is a trust in my neck, and I work hard to ask for help in our survival.

since the beginning of the war, from October 7 until today. We spent the first week of the war in Gaza. During this short period, we were exposed to many bombings and damages, and we were hit by rocket fragments as a result of close-in shelling. After that, On October 13, they asked us to forcefully evacuate the area due to its danger and go to southern Gaza. We went to Al-Shifa Hospital while we were living in a nightmare, extreme danger, and a devastating war. We remained there for a week and were subjected to siege and bombing. We did not have mattresses or pillows for our heads, and we had no drinking water، no Food, and nothing. We were sleeping on the ground between the feet of passers-by and the blood of the wounded. We were suffering from the pollution of the place. This is my picture in Al-Shifa Hospital, sleeping on the floor.

Since the war on Gaza began, it has lost almost everything In January, I lost 33 members of my family in one second to a single missile that ended their lives. I also lost my only uncle who died due to not receiving treatment and I do not want to lose anyone else.

As for me, I am a laboratory doctor, a graphic and website designer, and also a private lessons teacher. Before October 7th, I was living a beautiful and peaceful life with my family، I had ambition and many dreams. I was working in the Al-Shifa laboratory, which was bombed, and I lost my job there, also I had an office for private design work that was also bombed. What happened to us is a nightmare. I lost everything at once, my home and my work in all its aspects, my dreams and ambitions, and I became without a home, work, and clothes because we did not take anything from our house before it was bombed.

Before the war, my life was about successes and achievements. This picture is one of my design works that was displayed in one of the streets of Norway for a BBQ restaurant. I had a dream to reach the international level with my works and successes, but the occupation killed me and my dreams and everything before I arrived.

My work also designs perfume posters for a Saudi store, and I lost all of my work due to the war.

But my mother suffered the most, who had a hysterectomy 4 days before the war because of a tumor. She was sleeping on the floor and using a contaminated bathroom, which led to infection of the wound, bleeding, health complications, and a loss of 25 kilograms of weight. To this day, we have not been able to know the outcome of the tumor that was inside the uterus, and my mother also suffers from platinum in her spine due to the weakness of her vertebrae. She also suffers from a herniated disc in her neck, which poses a threat to her spine, She needs urgent surgery and is suffering from a lot of pain because she sleeps on the floor instead of a medical bed.

My mother also suffers from rheumatoid arthritis, asthma, and most importantly multiple sclerosis, in addition to being diagnosed with undifferentiated connective tissue disease and heart failure. She suffers from urinary excretion disorders, and needs urgent travel for treatment. Here is the medical report and diagnosis on her condition.

My father also suffers from heart disease, high blood pressure, and diabetes. Two months before the war, he underwent heart surgery due to 99% blockage of the arteries. His heart stopped twice during the operation. He stayed in intensive care for a month, and because of the war, he did not receive treatment for 8 months, which led to a severe deterioration in his health condition, and he suffered a severe heart attack that would have ended his life. He was unable to receive treatment due to the lack of medical equipment. My father took an echocardiogram on the floor without the patient’s bed.

My father also suffered a serious stroke a month ago due to his health condition deteriorating significantly. Please help me save their lives. I don't want to lose my father as I lost my only uncle who died in the war due to illness and not receiving treatment. I spend long hours with my father in his non-existent treatment. There is no medicine, no care, no treatment, no lunch, no meat, no protein. What we eat includes packaged foods, which cause many diseases.

My heart is torn apart in pain. My parents are the most precious things in my life and they are my whole life, I am the eldest daughter of my family and I have all the responsibility on my shoulders. I can no longer bear all this oppression and pain. Please help me, I need you, You are my only hope to save me and my family.

You can donate to DR Dalia and Her Family in GoFundme: click here

[crimeronan]

on-paper diagnosis is UCTD (undifferentiated connective tissue disease) unless further tests show specific organ or muscle damage. that's good news prognosis-wise, the doctor said i fit the lupus and MCTD diagnostic criteria but lack the characteristic full-blown organ damage (which is true), so he doesn't want to pick one or the other rn. apparently this diagnosis is often called "baby lupus" and/or used interchangeably with lupus & feels just as debilitating but has a Much better chance of remission because it's basically lupus/RA/sjogrens/scleroderma/WHATEVER that was caught early enough to suppress.

[tepkunset]

Fatigue Update: I just got a call from my nurse practitioner that my antibody blood work is showing that I may have "undifferentiated connective tissue disease". She's gonna refer me to a rheumatologist.

Even though this is a very vague diagnosis, it's so relieving to hear something even remotely concrete. To be able to say that I'm not just a lazy bitch, I have a legitimate condition causing me to be tired.

[david-box]

Image ID: An edit of the Lilo and Stitch "Nicest angel you have" meme. The edited text reads, "I need a diagnosis. Maybe something autoimmune. The nicest diagnosis you have." The final panel cuts to an image of Stitch laughing in front of green smoke labelled "Undifferentiated Connective Tissue Disease." End ID

[rarestereocats]

updates on life so you know that i'm still alive:

got a bunch of blood tests done in december, and did follow-up testing months later that led to me getting diagnosed with Undifferentiated Connective Tissue Disease. i get blood tests down every few months now to monitor it and i was started on hydroxychloroquine to manage it.

when we told my fiance's family, everybody was really supportive and positive. it was nice. told some of my family that i'm in touch with and either got bulldozed over so they could talk about their life or i was straight-up ignored.

learned that my cats that i unfortunately had to send back to my mom had died, both due to illnesses, but i didn't get any information beyond that.

my grandma died in february and i only know that cuz my sister told me. the family texted her to tell her what was happening, but nobody reached out to me at any point while she was on life support. after no contact with my mom for two years, we talked after i sent her pictures for grandma's memorial.

mom assumes that she immediately gets to have all the perks and benefits of that role in my life, and when she doesn't get them, she has a fucking mental breakdown and tries to guilt trip me. she doesn't seem to realize that i keep her at an arm's length away for a reason.

from december to april, had to deal with a family member threatening suicide and harming themselves on a near constant basis. this led to me spending a lot of time physically ill cuz the stress caused my autoimmune disease to flare up like a motherfucker.

my hamster had a health scare days before my fiance had to go in for surgery. she's okay now, it's dealt with, but if i would've lost her now of all times; that's it. she's my little buddy and keeps me going when i wanna give up.

fiance's surgery went exceptionally well, so no worries there.

anyways, i've felt more exhausted than i've ever been. i've genuinely thought of cutting contact with pretty much all of my blood relatives because all they do is stress me out. they'll use me as an emotional dumping ground, but never stop to ask how i'm doing. goddamn vultures are taking me for granted. :^)

[samikshak]

Dr. Ashaq Hussain Parrey- Rheumatologist in Srinagar

Dr. Ashaq Hussain Parrey, (' MBBS', 'MD ', 'FACR', 'FELLOW OF AMERICAN COLLAGE OF RHEUMATOLOGY') is one of the reputed doctors in Srinagar, India Specialist/Center: - Rheumatology Experience : 14+ years Dr. Ashaq Hussain Parrey's clinic offers. Rheumatoid arthritis Gouty Arthritis Ankylosing spondylitis Undifferentiated Arthritis Lupus (SLE) Psoriatic Arthritis Osteoarthritis Undifferentiated connective tissue diseases systemic sclerosis Polymositis /Dermatomyositis Vasculitis Mixed connective tissue Disease Sjogren syndrome

[sleepycatmama]

GAH. My right thumb/wrist is hurting a LOT.

When I first went to a rheumatologist I remember he kept asking about my hands. I was all no, it's my feet and knees! And why yes, I have been having elbow pain. Of course he knew to expect it to be my hands too. And the hands stayed ok for a lot longer, dunno how much of that is purring cats and how much is lots of hand exercise, but .... it has been worsening over time.

I'm cranky because my hand hurts, and I can't stitch any more right now. And I had a disappointing morning. And I feel ... useless right now.

[schizoaffectively]

Diagnosis Update! (Physical health related)

So when I saw the geneticists, I had gotten a dx of "Undifferentiated Connective Tissue Disease." Connective Tissue Diseases being things like Rheumatoid Arthritis, Lupus, Scleroderma, etc. It's kinda like an "Otherwise Specified" dx I believe - where you don't meet the full criteria for any one particular CTD, but still have the symptoms and struggles and whatnot!

(NOTE: EDS and other genetic connective tissue disorders were ruled out despite the hypermobility and other symptoms, because my medication for rheumatic conditions was working well, so it's thought to be more rheumatic connective tissue, rather than genetic.)

I was, and am still, so happy about being taken seriously! It wasn't super concrete, but it was still something that's a valid diagnosis, that real people have and struggle with.

Well! Today I saw my rheumatologist and she added another diagnosis of "Inflammatory Polyarthritis." We knew my type of symptoms with a connective tissue disease were closer to that of arthritis, and my medication I'm taking for it has the reasoning of arthritis... but she had never really put it on paper besides that.

I understand that it isn't a specific TYPE of inflammatory arthritis, as there are a couple, but it's saying it is arthritis... and that makes me feel very validated.

I'm not sure if that takes away the UCTD dx or not, but either way, all is good :)

/all positive

[elyjm1313]

bitching below the cut

So I'm like 90% sure after this weekend (apparently your toes are not supposed to turn purple-y red after being out in the cold) that the Undifferentiated Connective Tissue Disease I was diagnosed with back in like 2018 is really just lupus (which my mom, my aunt, and one of our cousins all have).

That said, it's been flaring cause I've been busy and kinda stressed so I kinda feel like I've been hit by a truck. 🙃

[clonerightsagenda]

Love that the autoimmune scene is so Like That that there’s a disease for when you don’t have enough symptoms for any of the diseases

[xerospaced]

I'm one of those people who appears perfectly regular but is actually dealing with invisible afflictions

Like my ADHD and (undiagnosed) Autism are damn inadmissible and I have a chronic health condition the first of word of which is literally "Undifferentiated" coz what could be clearer than "hey you're immune system is attacking you ig but we don't really know what's wrong with you but take these meds coz they might help maybe... or not. You could totally have absolute improvement but probably not. You might even just stay at this level. You'll probably get worse tho. See you in 6 months!"

And it's boring and annoying coz like...

I don't have the capacity to hold down a full time job but I seem like I do so I gotta. Coz this whole intelligent independent capable woman is easier to digest even when the facade does start to crack.

Anyway, I'm tired.