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Undifferentiated Connective Tissue Disease

Autoimmune Diseases | Last Active: May 9, 2023 | Replies (75)

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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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Replies to "I was diagnosed with UTCD eight years ago, but I'm not sure that is my problem...."

Welcome, Chris. You'll notice that I moved your post to this existing discussion of the same name:
- Undifferentiated Connective Tissue Disease: https://connect.mayoclinic.org/discussion/uctd/

I did this so you can read previous posts and connect easily with members like @yellowdoggirl @cherylmcg @jenko108 @oldkarl @basslakebabe19 and many others.

You might also be interested in these related discussions:
- Undifferentiated Connective Tissue Disease turning into Lupus? by @pattym https://connect.mayoclinic.org/discussion/undifferentiated-connective-tissue-disease-turning-into-lupus/
- UCTD, low MCV, low MCH and low neutrophils by @aayre https://connect.mayoclinic.org/discussion/uctd-low-mcv-low-mch-and-low-neutrophils/
- Recently diagnosed with autoimmune disease - looking for support by @mils, https://connect.mayoclinic.org/discussion/recently-diagnosed-maybe-need-support/

It sounds like you are questioning your diagnosis of UCTD, and are puzzled by the persistent symptoms that neither get better nor worsen. A common theme among members with UCTD is that many of them have other autoimmune conditions along with UCTD. Might that be your situation too? Do you have other autoimmune conditions?

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.