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:)

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@chris1234

I was diagnosed with UTCD eight years ago, but I'm not sure that is my problem. My rheumatologist said it is mild but my symptoms don’t seem so. I think my diagnosis was based on a positive ANA (1:320 then 1:160) and knee pain. I also had a positive ISCA igg (90.4) and Iga (67.6) test on an IBD panel but a colonoscopy and endoscopy ruled out anything. I'm 42 years old and my symptoms don't seem to have improved or worsened. 

One of the main issue I seem to have is weakness in my ankles, feet, and calves. No one seems to know what to think of it.  I've been checked by a neurologist (head MRI, nerve conduction), endocrinologist, vascular doctor, gastroenterologist, and physical medicine and rehabilitation doctor, and others, but nothing really has been found. Lyme was ruled out too. 

Other symptoms I have are knee pain, fatigue, pressure in my head and face, depression and anxiety, pressure in my pelvic area sometimes, and vibration, tingling or pins and needle type sensations sometimes. 
I take plaquenil and an antidepressant. At other times I've tried prednisone, methotrexate, sulfasalazine, Lyrica, gabapentin, and others.  Nothing has seemed to make much of a difference.  
Just wondering if anyone had heard of anything similar?

Thanks,
Chris

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I'm 89yo, wth similar symptoms as yours. Mine are still developing since post moderna vax 1, which started the same day as the vax 1 3/4 years ago. All of what I am doing to control my symptoms reflects my own information, from professional reading and groups like this one and Fb autoimmune. What helps undo swelling-inlammation of feet and ankles and intensifying body pain is 3 day distilled water fast, which is a saving grace. Also helps kidneys, which shut down and top of hands which change color and swell slightly. Within a week after vaccine, I couldn't hold my head up. my huge energy supply was gone. I was exhausted and sleeping during day. Not me. Left leg intermittent pain from Cipro drug years before becomes constant nagging, keeping me awake. Distilled water fast stops pain and swelling temporarily. I am also dairy, gluten free, sugar free, and mostly organic, mostly grain free. Learned about low dose naltraxone (LDN) from autoimmune Fb group and started it about 2 months ago. Ordered from Ageless. HAD trouble absorbing and instead of 1 3mg capsule a day, took 1 or 2 capsules a week for a month. I can now take 2/3 dose LDN, and it knocks me out and I am not drugged in AM. I should be on a full dose by now, which is 9 mg/night, but am sill phasing in. I think it's helping. Hard to say, bec. I'm still undermedicated. A recent study I read tested the effects of folic acid on arthritic pain. Pos results. Study advised taking B12 with the Folic acid. Read B12 on its own helps with body pain. I have patches, casules and vitamin gummies with the Folic acid-B12 combo. I personally found that C patches help with pain, especially when placed over inflammation site. My reading supports D3 for autoimmune sufferers. I use Alaska Cod liver capsules which gives combined A and D, which should be taken together. I drink alcohol free beer for probiotics, after reading recent study. I also have autoimmune suppressed gamma globulin, so cannot use most RA meds, which block immune response. I'm on weekly gamma globulin replacement infusions, so am sticking with supplements, Immune suppression and UTCD are treated medically in opposite ways. Just a week ago, a friend told me she started Cymbalta for neuropathy, which helped her after years of suffering. She said three friends with arthritis were helped as well. Blessings to all.

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I am new to this discussion! I have been on Mayo Connect for over 5 years trying to get help with Lyme Disease. In reading an article about Alan Jackson struggle with CMT. When digging in deeper I found many of the symptoms were the same as Lyme. What interested me the most were a couple symptoms that do not appear in Lyme. 1. Loss of Muscle loss in my legs and arms. 2. My unusual gait.3. Loss of strength in both my arms and hands! 4. Muscle cramping in my legs!
These do not appear in Lyme.
Looking back in my life I can remember leg cramping as a young child. I also have extreme high arch and week ankles. Along with what I mentioned above the idea came to me to peruse CMT.
My PCP has been hesitant to go along with my symptoms, but has agreed to send me to a neurologist and that if they test a certain way and think it may be a possibility, they can then order a Genetic Test.
It's not that there is a cure for either Lyme or CMT, it's just finding answers to definitely find an answer to what I have been suffering!
I would appreciate any suggestions or experiences any of you have had!
Bless You All!
Sundance

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@sundance6

I am new to this discussion! I have been on Mayo Connect for over 5 years trying to get help with Lyme Disease. In reading an article about Alan Jackson struggle with CMT. When digging in deeper I found many of the symptoms were the same as Lyme. What interested me the most were a couple symptoms that do not appear in Lyme. 1. Loss of Muscle loss in my legs and arms. 2. My unusual gait.3. Loss of strength in both my arms and hands! 4. Muscle cramping in my legs!
These do not appear in Lyme.
Looking back in my life I can remember leg cramping as a young child. I also have extreme high arch and week ankles. Along with what I mentioned above the idea came to me to peruse CMT.
My PCP has been hesitant to go along with my symptoms, but has agreed to send me to a neurologist and that if they test a certain way and think it may be a possibility, they can then order a Genetic Test.
It's not that there is a cure for either Lyme or CMT, it's just finding answers to definitely find an answer to what I have been suffering!
I would appreciate any suggestions or experiences any of you have had!
Bless You All!
Sundance

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Have you heard about Lyme coinfections. My son had one that was killing him, missed by his primary, but diagbosed and successfully treated by second doc. Google Lym coinfections, and find five. His was bacterial , successfully treated with a new round of antibiotics, and then checked with a second blood test to make sure the infection was gone. You can google the treatment for same and the specific tests used to diagnose. You seem to have a specific source that is harming you. If it was me, I would look for Lyme coinfections. That is such a real possibility.
All the best in finding answers soon and for returning to a good healthy safe comfortable place physically and mentally.

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Is this similar to Mixed Connective Tissue disease?

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I was also diagnosed with the same except I do have lupus traits and have RA. It is hard to ind more info on this as well since my doctor doesn't quite know but have symptoms o lupus and tested charts of positive ANA. Glad to know someone is in the same boat as I am.

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Hello. I have RA Lupus and Sjogrens and have also been diagnosed with mixed connective disease. I have never heard of undifferentiated connectives disease. Good luck on you journey.

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I have this.
From https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp#what

Definition:
used to describe a condition in people who have symptoms and lab test results which suggest a a systemic autoimmune disorder or connective tissue disease but which are not extensive or specific enough to meet usual criteria for a diagnosis of a defined connective tissue disease such as systemic lupus erythematosus (lupus), rheumatoid arthritis, systemic sclerosis (scleroderma), Sjogren’s syndrome, or myositis.

Mine started as purple lesions on my feet "cutaneous lupus" the rheumatologist said.
Had pos. ANA once, a few other things off, celiac and pernicious anemia, hyper mobile joints, tolerable pain, Raynaud's, dry eyes, dry mouth...
Treated with plaquenil 6 years so far so good.
Best of luck to you, adlttl123

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Look into Ehlers-Dalmos connective tissue disease. We think my 34 son has it.

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I was diagnosed with Mixed Connective Tissue Disease after years of running to Ortho doctors with pains in what I thought were joints and muscles. Joints and muscles were affected because of the “Connective” tissues, ligaments and tendons. I began to use heat especially during the cold months when all my various body parts ached. I had carpal tunnel surgery that affected the ligaments /tendons from my elbow to my wrist that freaked the doctor out! Months of running to neuro doctors, no resolution. The most dramatic incident was when I was dancing and my hip dislocated and spontaneously corrected, but with severe pain. It took over a year to feel normal. Shortly thereafter I got my diagnosis by a rheumatologist and am on Plaquenil. It’s given me a new lease on life!!!!

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