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Undifferentiated Connective Tissue Disease

Posted by bunnysammy @bunnysammy, Jul 31, 2018

Hey everyone! So if you've seen my last post you know I've been in the process of diagnosis. I'm still not 100% but my Rhuemy is think Undifferentiated Connective tissue disease which is not the same as Multiple connective tissue disease. I was wondering if there's anyone on here who has this? I don't see much awareness for this disease or much information. I see a lot of mixed info so I'd love to hear experiences, explanations, like anything and everything that anyone knows about this. Thanks guys.
So if I do have UCTD mine presents itself very similarly to lupus and RA with some Sjorgens similarities too. So one step closer to diagnosis:)

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

marymaryoregon | @marymaryoregon | May 6, 2023
In reply to @terrirussell "Hi…..reading through all of these I thought I would give you something else to consider……just what..." + (show)
@terrirussell

Hi…..reading through all of these I thought I would give you something else to consider……just what you want right?? !!! ……anyway…..so much of what you convey is my life with Ehlers-Danos Syndrome …..which is a connective tissue disorder of basically inferior collagen…..which is of course everywhere!!! Everywhere !!! In the body…….some are affected so badly internally and some with all of their joints and some both!……skin, internal organs, joints…..you name it. That would be me. There are actually 13 types but the most common that I also have, is hypermobility type. I am full of titanium fixing and replacing joints, as well as having a lot of poorly perfecting internal systems repaired or removed due to connective tissue issues. I recently read on my EDS site that there are people being diagnosed with what you have when perhaps they actually may have EDS. EDS community went through this over 10 years , 1995-2005, of trying to address the many different kinds and categorizing them. It is just recently that you tell a doctor and they don’t look at you blankly. The younger doctors are getting in in med school…..finally. If you want a scale to use look up the signs for it and also do the Brighton Scale as that is very good but only really about the Hypermobility one. I am also 72 and have had all the very loose skin, that often comes w this, removed!….Best gift my hubby ever gave me!…..I am dealing w a lot but I look good! Lol! Take good care!……there is an army of information on this now! Terri

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Ha! I would happily give you 50% of my joint tightness in trade for your joint hyper mobility if that was possible!

I did look into EDS and it really does not fit my pattern of symptoms, but I appreciate the thought to keep my mind open!

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2 replies
TSB | @terrirussell | May 6, 2023
In reply to @marymaryoregon "Ha! I would happily give you 50% of my joint tightness in trade for your joint..." + (show)
@marymaryoregon

Ha! I would happily give you 50% of my joint tightness in trade for your joint hyper mobility if that was possible!

I did look into EDS and it really does not fit my pattern of symptoms, but I appreciate the thought to keep my mind open!

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There are actually 13 forms of it and only one is w hyper mobility . But I’m sure you spotted that! I wish you well! It seems that each of us must find our own footprint that works! Blessings! And Tenacity!!!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 6, 2023
In reply to @marymaryoregon "Ha! I would happily give you 50% of my joint tightness in trade for your joint..." + (show)
@marymaryoregon

Ha! I would happily give you 50% of my joint tightness in trade for your joint hyper mobility if that was possible!

I did look into EDS and it really does not fit my pattern of symptoms, but I appreciate the thought to keep my mind open!

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@marymaryoregon @chevykat2 I recently found this article about autoimmune disease diagnosis. https://autoimmune.org/resource-center/diagnosis-tips/
It gives good information about getting a diagnosis.
What are your thoughts?

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yellowdoggirl | @yellowdoggirl | May 8, 2023

Hello @chevycat2! Nice to hear from someone else who has this nebulous problem. My blood tests were positive, now sort of negative,. symptoms remain, pain, hypermobile joints, increased now at time of great (unrelated) stress. Rheumatologist said 30% differentiate, 30% stay same, 30% go away. I'm in a holding pattern.
I hope you feel better!!!

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lemartin417 | @lemartin417 | May 8, 2023
In reply to @carolhastings "I have UCTD and have been taking hydroxychloriquine for approximately 9 months. I really can't complain;..." + (show)
@carolhastings

I have UCTD and have been taking hydroxychloriquine for approximately 9 months. I really can't complain; the drug has prevented me from getting flare-ups which were extremely painful. So far, so good! I only need an Advil or Over-the-Counter pain pill for mild discomfort wherever it hits (have had flare-ups in my hands, wrists, neck, sternum). I'm 72; active, but my biggest aggravation is fatigue. I wish there was a pep pill for that (but would rather deal with constantly feeling tired than taking steroids). Most physicians will suspect depression (and I"m not depressed). I sleep more than most, but can resume my 90-mile per hour pace once I'm in an, "upright position." Hope this helps.

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I have multiple sclerosis and connective tissue problems with a history of rheumatoid arthritis and am chronically fatigued. I was given 5 mg Ritalin to take up to 3 x day and it has helped me considerably. You may want to ask your doctor if you could try something like that to help you to be more awake/alert throughout the day.🤷‍♀️

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WI CF | @rachellefanello | May 9, 2023

My live is like lemartin417. I have had good help with Ritalin at the 3x day. Just remember with the Autoimmune diseases they are attacking your system all the time, which is giving you the tiredness. Keep on it and in touch with your doctor. Don't just say this is how it is. Keep a positive attitude and not a poor me one. They have said I need to go on disability, and I refuse to give up. I still work full time because I love my job. I take off when I need to rest through intermittent FMLA. Good luck!

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