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.

cherylmcg | @cherylmcg | May 11, 2023

I found it interesting that one of tge articles stated the use of monoclonal antibodies as a way to tone down the immune system. In my case, I am producing monoclonal antibodies IGM and IGG that don’t function and reduce the production of healthy polyclonal antibodies, which I assume contributes to my low white blood cell and red blood cell count. Maybe this helps counteract my autoimmune diseases (RA and hypothyroidism)? Interesting.

reneem2123 | @reneem2123 | May 12, 2023

In reply to @cherylmcg "It’s called dysfunctional Eustachian tube. I had ear infections and my ear drum burst several times..." + (show)

There are eat poppers?!! Oh I’m off to order that immediately!! Thank you! My ears are awful! I can’t fly because of them. The pain is unbearable! On top of this weird connective tissue disease I also have chronic migraines, idiopathic intracranial hypertension, fibromyalgia and osteoarthritis to top it off. I’m a hot mess lol. I’m so used to living with pain and extreme fatigue I wouldn’t know what to do with myself 😂

Becky, Volunteer Mentor | @becsbuddy | May 12, 2023

In reply to @cherylmcg "It’s called dysfunctional Eustachian tube. I had ear infections and my ear drum burst several times..." + (show)

@cherylmcg Can I ask what an ear popper if? Is it just like what it sounds?

cherylmcg | @cherylmcg | May 13, 2023

EarPopper Ear Pressure Relief Device Home Version

Search on Amazon. You 1) put a mouth full of water in your mouth and hold it in your mouth 2) put the unit into one of your nostril while you press the other nostril close with you fingers 3) swallow the water. These actions will cause your ears to pop which brings oxygen in the eustachian tube and helps unplug them.

suetex | @suetex | May 14, 2023

This is of interest to me. My situation seems so muddled that the dianoses that I have been given don't seem quite right. (Crohn's, PMR and recently, scleroderma) Having just switched rheumatologist (again) this lady seems very knowlegable and a good communicator so I hope to learn alot. She also initiated a lot of testing on me, more than anyone else has done. More as I learn it and if I end up with the UCTD lable, we can start our own group. (I also have a positive ANA that results from a high SSDNA, which unfortunantly doesn't tell anyone anything.) I do push for the use of Low Dose Naltrexone but have put it on hold (for now). I want to give the new doc the symptoms that the lack of it produce.

southerngrits | @southerngrits | May 18, 2023

With me 15 years ago I was Dx with undifferentiated mixed connective disease. I already had degenerative arthritis and fibromyalgia. Two years later I developed stage 3 non-Hodgkin
Large B cell lymphoma. Two years later SLE lupus. It has been one thing after another since then. Just listen to your body and if your doctor “Huns” you or poopoos you - find another doctor. Big thing I have learned is lab test are not the end all and if those are the only thing the doctor uses to diagnose- find another doctor

marymaryoregon | @marymaryoregon | May 18, 2023

In reply to @suetex "This is of interest to me. My situation seems so muddled that the dianoses that I..." + (show)

I’ve also heard low dose naltrexone can be helpful in autoimmune conditions, let us know your experience if you end up trying it!

suetex | @suetex | May 19, 2023

In reply to @marymaryoregon "I’ve also heard low dose naltrexone can be helpful in autoimmune conditions, let us know your..." + (show)

I've got lots of good things to say about it. I went on it in May of 2019 and in two days it stopped my "non moving" pain. And it healed my small intestine in about 2 months. It had been plagued by small ulcers for a couple of years. As far as PMR symptoms go, I can't tell if it has been a real help. I have changed rheumatologist and negotiating with the new one about the LDN. She knows about it but has never used it. She promises to take a hard look at it. I have gone off of it for now and will report to her on how it goes. Ideally, my GI doc should be the one 'scribing it but that medical community is behind accepting it. Over 80 % of the Crohn's patients get some benefit from it. As I can testify.

paktoledo | @paktoledo | May 19, 2023

In reply to @southerngrits "With me 15 years ago I was Dx with undifferentiated mixed connective disease. I already had..." + (show)

Thank you. Hope you feel better.Pat

ebero | @ebero | Feb 29 9:27pm

Gosh, I feel like I'm late to the party.....all the posts are from 2023! I was Dx with UCTD yesterday. For symptoms, I could cut and paste @marymaryoregon's post, they are so similar.
I told the rheumatologist that for all these years I thought I just had a collection of problems--saw an eye doctor for extreme dry eyes, used creams for dry skin, saw an ENT because I had trouble swallowing and a constant sore throat that turned out to be caused by GERD. Had constant stomach troubles that improved as I veered towards GF and the DF lifestyle. Saw my GP when I started hypothyroidism years ago, and for arthritis in knees and hip recently. I saw a hand specialist for my stiff hands..... Only after falling twice and getting referred to a neurologist for balance issues (and ultimately SFN) did I learn that I have something I've never heard of that could be causing it ALL! Go figure. I have high ANA, low platelets, tested positive for both lupus and RA, but don't really have either of those.
My GP put me on the Auto Immune Protocol diet and that has made a big difference with the neuropathy. My hands and feet don't burn and buzz as much now, but they are clearly worse if I stray into processed sugar, or ingest too much natural sugars (fruit.) Caffeine also seems to be a trigger, as does peanut butter. I would be interested in talking to anyone about this. And, how do we deal with having a problem that is largely invisible? People really do think you're making it up and my discoveries about food sensitivities are treated with scorn (by my husband) and disbelief (by everyone else.)
Thanks for listening. 🙂

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