1. < Autoimmune Diseases

Undifferentiated Connective Tissue Disease

Posted by marymaryoregon @marymaryoregon, Apr 11, 2023

Autoimmune diseases are tricksy. Symptoms can come and go unexpectedly, test results aren’t always super helpful, so much about diagnosis relies on an individual’s judgment, and some of them have stupid names like “undifferentiated connective tissue disease” (UCTD).

UCTD doesn’t have an agreed upon criteria for diagnosis, but many providers and researchers use a definition of a positive ANA test for at least 3 years plus at least one symptom of a “defined” connective tissue disease (lupus, RA, Sjögren’s, scleroderma).

Some people with UCTD will eventually have enough symptoms (or positive test results) to change the diagnosis to lupus, RA, Sjögren’s, etc. A few people will stop having symptoms altogether. But the majority of people with UCTD will continue with that diagnosis.

I’d love to hear more about your experiences as I’m at the very beginning of my journey with UCTD. Has anything helped you in your day to day? How do you explain your diagnosis (or maybe/kind-of/might be diagnosis) to your family and friends? Does anyone want to help create some kind of patient support/awareness group or website or have any suggestions for existing groups or websites out there?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Christine | @thisoldewe | Mar 1 12:29pm

Hi ebero,
Welcome to 'the club' of 'you look good, how can you be sick' club.
So many of these autoimmune conditions follow this same path, with difficulties from friends and family who do not understand. Certainly your hubby will be having the usual human reaction of, 'if I can make this NOT true, then I don't have to worry about it !" This response only works for a while then reality moves in. Perhaps taking him to the specialist / doctor appointment will help. Getting the scoop from the boss brings a measure of factual reality. [despite your frustration with others, try to be patient with them... we would love to walk away and ignore this too, if we could!]
Friends, well, that can be another story. The 'wonderful' thing [maybe the only thing good] about a long term illness is the 'clean out' effect! A diagnosis such as this brings the true friend to the top[ like sweet cream]. It can be very amazing and shocking as you experience who really is a true friend - and the ones which just fall away. But do not despair, you don't need dead weight, you need people who are concerned about you... even if they do not understand; ones who are ready to learn and to listen and to support you through this journey.
You will find Connect wonderful in having people who have 'been there, done that', and understand the upheaval that can occur in every aspect of life with a tough diagnosis. It does fall to you to often be the 'teacher' and the one who needs the patience with friends and family ! Find some good written material - the Mayo Clinic websites are great. Make sure you check all internet material for solid medically and scientifically based information!
Keep asking questions on this site, you will find great help and support from all.
I am sending you a big hug as you commence your journey, and wish you all possible best outcomes as you go forward.

REPLY
3 replies
ebero | @ebero | Mar 2 8:03am
In reply to @thisoldewe "Hi ebero, Welcome to 'the club' of 'you look good, how can you be sick' club...." + (show)
@thisoldewe

Hi ebero,
Welcome to 'the club' of 'you look good, how can you be sick' club.
So many of these autoimmune conditions follow this same path, with difficulties from friends and family who do not understand. Certainly your hubby will be having the usual human reaction of, 'if I can make this NOT true, then I don't have to worry about it !" This response only works for a while then reality moves in. Perhaps taking him to the specialist / doctor appointment will help. Getting the scoop from the boss brings a measure of factual reality. [despite your frustration with others, try to be patient with them... we would love to walk away and ignore this too, if we could!]
Friends, well, that can be another story. The 'wonderful' thing [maybe the only thing good] about a long term illness is the 'clean out' effect! A diagnosis such as this brings the true friend to the top[ like sweet cream]. It can be very amazing and shocking as you experience who really is a true friend - and the ones which just fall away. But do not despair, you don't need dead weight, you need people who are concerned about you... even if they do not understand; ones who are ready to learn and to listen and to support you through this journey.
You will find Connect wonderful in having people who have 'been there, done that', and understand the upheaval that can occur in every aspect of life with a tough diagnosis. It does fall to you to often be the 'teacher' and the one who needs the patience with friends and family ! Find some good written material - the Mayo Clinic websites are great. Make sure you check all internet material for solid medically and scientifically based information!
Keep asking questions on this site, you will find great help and support from all.
I am sending you a big hug as you commence your journey, and wish you all possible best outcomes as you go forward.

Jump to this post

Thank you for the words of wisdom, Christine. I have friends that were 'in the loop' and knew that I was doing all these tests. They were interested in hearing my 'diagnosis.' When I said "Well, it's something I've never heard of" and told them UCTD, they were like, well, good, that doesn't sound bad. My neurologist said "I've checked you for the bad stuff, you are fine, it's just some auto-immune problem. The rheumatologist will help you with that."
So, great, huh? 😀
Hanging in there, loving life,
ebero

REPLY
1 reply
adlttl123 | @adlttl123 | Mar 2 10:12am
In reply to @thisoldewe "Hi ebero, Welcome to 'the club' of 'you look good, how can you be sick' club...." + (show)
@thisoldewe

Hi ebero,
Welcome to 'the club' of 'you look good, how can you be sick' club.
So many of these autoimmune conditions follow this same path, with difficulties from friends and family who do not understand. Certainly your hubby will be having the usual human reaction of, 'if I can make this NOT true, then I don't have to worry about it !" This response only works for a while then reality moves in. Perhaps taking him to the specialist / doctor appointment will help. Getting the scoop from the boss brings a measure of factual reality. [despite your frustration with others, try to be patient with them... we would love to walk away and ignore this too, if we could!]
Friends, well, that can be another story. The 'wonderful' thing [maybe the only thing good] about a long term illness is the 'clean out' effect! A diagnosis such as this brings the true friend to the top[ like sweet cream]. It can be very amazing and shocking as you experience who really is a true friend - and the ones which just fall away. But do not despair, you don't need dead weight, you need people who are concerned about you... even if they do not understand; ones who are ready to learn and to listen and to support you through this journey.
You will find Connect wonderful in having people who have 'been there, done that', and understand the upheaval that can occur in every aspect of life with a tough diagnosis. It does fall to you to often be the 'teacher' and the one who needs the patience with friends and family ! Find some good written material - the Mayo Clinic websites are great. Make sure you check all internet material for solid medically and scientifically based information!
Keep asking questions on this site, you will find great help and support from all.
I am sending you a big hug as you commence your journey, and wish you all possible best outcomes as you go forward.

Jump to this post

This is wonderfully written and truly accurate information per my walk with my RA Lupus and Sjogrens. I think in all illnesses and tragedies we find our true friends. And by the way how dare you go see and doctor “not looking like you feel!” I’m addressing the part where you’re told you look good..you don’t look sick. Well then I must not be sick since you’re judging me by my looks. Who needs people like that in their lives. Good friends aren’t judging they are giving us a hug and saying ‘how are things today?’ At least that’s what makes me feel supported. I have a friend in long term recovery from addiction. She’s just stunning. I’m with her often and she’s often told you don’t look like an alcoholic. She ask what does an alcoholic look like? God bless! Stay close. There’s wonderful..helpful..knowledgeable people here. Please keep us posted. 🙏🤩

REPLY
Christine | @thisoldewe | Mar 2 10:29am
In reply to @ebero "Thank you for the words of wisdom, Christine. I have friends that were 'in the loop'..." + (show)
@ebero

Thank you for the words of wisdom, Christine. I have friends that were 'in the loop' and knew that I was doing all these tests. They were interested in hearing my 'diagnosis.' When I said "Well, it's something I've never heard of" and told them UCTD, they were like, well, good, that doesn't sound bad. My neurologist said "I've checked you for the bad stuff, you are fine, it's just some auto-immune problem. The rheumatologist will help you with that."
So, great, huh? 😀
Hanging in there, loving life,
ebero

Jump to this post

Thanks for your humour, ebero!
I am chuckling over the famous "pass the buck to the next doc" line. The word, "fine" in this case means that it is "OK" for him to pass you on !
But it is true, that the rheumatologist is better placed to understand what's happening!
Keep that humour... it is gold!

REPLY
lyndal0502 | @lyndal0502 | Mar 2 10:49am

I too have UCTD .. your frustrations match mine completely
My day to day life is not fun at all- (especially when weather is rainy )
But combined w exhaustion n pain from fibromyalgia n arthritis , daily living can be quite difficult
Thankfully i do have some days when i can function with make up on and do errands or visit my daughter n grandson
But these days seem to be coming to me less frequently lately
On this coming Monday i have appt with a rheumatologist who had been head of dept at Hospital for Special Surgery .. very well regarded by others in
Medical field
So i am hoping i get more clarity on how to cope day to day and what true diagnosis he may come up with…
I’ve been diagnosed before by 3 different rheumatologists with different opinions on what i have - fibromyalgia, poly myalgia rheumatica , and Undifferentiated Connective Tissue Disease…
Last time i saw a rheumatologist was about 4 or 5 years ago
So it’s time for a new check up and new eyes to see me and my condition to be once again evaluated!
Let me know how u do going forward
You are not alone in this difficult journey sweetheart
Hugs to you
Lynda L

REPLY
sommerreign | @sommerreign | Mar 2 11:44am
In reply to @thisoldewe "Hi ebero, Welcome to 'the club' of 'you look good, how can you be sick' club...." + (show)
@thisoldewe

Hi ebero,
Welcome to 'the club' of 'you look good, how can you be sick' club.
So many of these autoimmune conditions follow this same path, with difficulties from friends and family who do not understand. Certainly your hubby will be having the usual human reaction of, 'if I can make this NOT true, then I don't have to worry about it !" This response only works for a while then reality moves in. Perhaps taking him to the specialist / doctor appointment will help. Getting the scoop from the boss brings a measure of factual reality. [despite your frustration with others, try to be patient with them... we would love to walk away and ignore this too, if we could!]
Friends, well, that can be another story. The 'wonderful' thing [maybe the only thing good] about a long term illness is the 'clean out' effect! A diagnosis such as this brings the true friend to the top[ like sweet cream]. It can be very amazing and shocking as you experience who really is a true friend - and the ones which just fall away. But do not despair, you don't need dead weight, you need people who are concerned about you... even if they do not understand; ones who are ready to learn and to listen and to support you through this journey.
You will find Connect wonderful in having people who have 'been there, done that', and understand the upheaval that can occur in every aspect of life with a tough diagnosis. It does fall to you to often be the 'teacher' and the one who needs the patience with friends and family ! Find some good written material - the Mayo Clinic websites are great. Make sure you check all internet material for solid medically and scientifically based information!
Keep asking questions on this site, you will find great help and support from all.
I am sending you a big hug as you commence your journey, and wish you all possible best outcomes as you go forward.

Jump to this post

It gets tiring having to explain an autoimmune connective tissue disorder to friends & family~
I’m disconnecting rather than trying to help ppl understand anymore.
When asked “how are you” I say “good & how are you?” B/c I’ve discovered nobody really wants to know,….
Being alone and isolated is often harder than carrying the burden of this painful disorder that has ruined my life…

REPLY
1 reply
jillalayne66 | @jillalayne66 | Mar 2 4:59pm

I am so glad I found this group. I had been misdiagnosed for years starting when I was a teenager. JRA, but RA negative, then Adult JRA which doctors later scoffed at. I finally found a doctor who checked for HBLA 27 and gave the diagnosis of UCTD. I had a successful treatment twice of hydroxychloroquin and methotrexate and went into remission for quite some time, both times. Recently it has returned, (could it be stress induced?) and the fatigue is horrible. I feel like I have a bad flu bug but I know that's not it. I am only 57 and working full time and it is so hard to explain to my employer why I feel so awful as this is not a common autoimmune disease. I am not sure if my tinitus is related, and lately I have been having significant problems with name recall, and memory issues. I am in yet another new town and trying to find help has been trying.

REPLY
2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 2 8:08pm
In reply to @jillalayne66 "I am so glad I found this group. I had been misdiagnosed for years starting when..." + (show)
@jillalayne66

I am so glad I found this group. I had been misdiagnosed for years starting when I was a teenager. JRA, but RA negative, then Adult JRA which doctors later scoffed at. I finally found a doctor who checked for HBLA 27 and gave the diagnosis of UCTD. I had a successful treatment twice of hydroxychloroquin and methotrexate and went into remission for quite some time, both times. Recently it has returned, (could it be stress induced?) and the fatigue is horrible. I feel like I have a bad flu bug but I know that's not it. I am only 57 and working full time and it is so hard to explain to my employer why I feel so awful as this is not a common autoimmune disease. I am not sure if my tinitus is related, and lately I have been having significant problems with name recall, and memory issues. I am in yet another new town and trying to find help has been trying.

Jump to this post

@jillalayne66 Boy, does everyone here know about fatigue! You may want to check out the following discussion which talks about fatigue and how it can be managed:
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Like I didn’t pay any attention to my “spoons” today and boy, did I know it later!
You’re in a new town and need to find a doctor, correct? Try contacting the Genetic and Rare Diseases organization (GARD) and they should be able to help:
https://rarediseases.info.nih.gov/
Can you call GARD on Monday. Let me know what you learn, please.

REPLY
bbellen | @bbellen | Mar 3 10:52am
In reply to @sommerreign "It gets tiring having to explain an autoimmune connective tissue disorder to friends & family~ I’m..." + (show)
@sommerreign

It gets tiring having to explain an autoimmune connective tissue disorder to friends & family~
I’m disconnecting rather than trying to help ppl understand anymore.
When asked “how are you” I say “good & how are you?” B/c I’ve discovered nobody really wants to know,….
Being alone and isolated is often harder than carrying the burden of this painful disorder that has ruined my life…

Jump to this post

Oh, how I hate the “How are you?” question!! It reminds me that I am certainly NOT great. I get annoyed because it is a constant reminder that I don’t feel well and that I am doing all I can to just put one foot in front of the other. I agree that most don’t really want to know so I too am starting to reply with “fine,” but each time I do, it reminds me that I am the only one living in my reality and that is definitely a lonely place to be.

There is another group of people who always say, “What did you do this weekend?” Or “Do anything fun this weekend?” Well, on a good weekend I did some laundry and some dishes but mostly tried desperately to rest and not wallow in self-pity. Does that sound fun? I don’t think that’s the answer they expect to get so instead I say “oh, nothing much. Just a quiet weekend.” Of course they say “oh, that sounds great!” I wish they would just stop asking.
REPLY
ebero | @ebero | Mar 3 2:17pm
In reply to @jillalayne66 "I am so glad I found this group. I had been misdiagnosed for years starting when..." + (show)
@jillalayne66

I am so glad I found this group. I had been misdiagnosed for years starting when I was a teenager. JRA, but RA negative, then Adult JRA which doctors later scoffed at. I finally found a doctor who checked for HBLA 27 and gave the diagnosis of UCTD. I had a successful treatment twice of hydroxychloroquin and methotrexate and went into remission for quite some time, both times. Recently it has returned, (could it be stress induced?) and the fatigue is horrible. I feel like I have a bad flu bug but I know that's not it. I am only 57 and working full time and it is so hard to explain to my employer why I feel so awful as this is not a common autoimmune disease. I am not sure if my tinitus is related, and lately I have been having significant problems with name recall, and memory issues. I am in yet another new town and trying to find help has been trying.

Jump to this post

I had to retire from a job I enjoyed because of the fatigue, but I wasn't referred to a neurologist until I had two bad falls. I have terrible tinnitus, but again, no one else can see it or hear it, so it must be all in my head, right? (double entendre intended, haha)
I'm starting hydroxychloroquin today! Rheumatologist said it could take 3-6 months to see any improvement. Is that your experience?
Hang in there, the stress of being in a new place can't be helping.
ebero

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