Pain. Fatigue. Stiffness. Face rashes. Dry skin. Dry eyes. Dry mouth. Bad lungs. Bad indigestion. Arthritis. Insomnia. Sleep apnea. Muscle twitches. Swelling. Teensy handwriting. Brain fog. Bad memory. You name I got it or had it.
Hi debbie, im having this atm, i got a high positive ANA however i have lots of other lupus like symptoms, muscle ache, eye issues, twitches as well. Did u have fatigue and weakness at any point? And how bad were your twitches?
@@jennyjohnson5428 Definitely can be more difficult while trying to write "legibly"~My penmanship has totally worsened over time since my fingers are much more painful than before!!
Thanks for this explanation. Doctors shouldn't minimize the severity of this disease. I have severe neuropathic pain in several areas of my body. I am on Enbrel, Plaquenil, and Acthar and work as a psychotherapist and have a full life. But this disease can be as debilitating as RA and Lupus. So never minimize this dx with patients.
Nancy Fish Bravman If you have this disorder (like me), think you may, or have friends/family who suffer please consider helping increase awareness by taking a look at this petition. I am eager to increase awareness. Awareness about this disorder is VERY low. The Mayo Clinis is a very reputable and sort of GO TO place for facts and answers. Also, if you feel eager to increase your efforts, please consider reposting this and asking others to sign and repost. www.thepetitionsite.com/863/653/918/get-mayo-clinic-to-write-about-uctd-on-their-website/ Thanks in advance!!
I think this may be what I’m dealing with. The joint pain is horrible. But all my doctor says it is is fibromyalgia. Yes I do have muscle pain and tenderness, but this horrible joint pain in my hands, knees ankles. And the mouth sores, and skin rashes , and my thinning hair, I. Unsteady too been having to use a cane now for 8 months. I’m so tired.
I was first diagnosed with lupus, I had a positive ANA test, and presented with raynauds, ibs, and fibromyalgia, after 2 years I decided to get a 2nd opinion from one of the top rheumatologists in Atlanta, and he diagnosed me with UCTD. I take plaquenil, and although I still have some pain and discomfort I’ve been on an even keel, which all I can ask. I wish more people would understand this disease. I now live in New Zealand and the health care community won’t even acknowledge my disease, instead they refer to my aches and pains as fibromyalgia, which is ridiculous since I improve with prednisone. Thanks for posting this video, it’s was very informative.
I was on prednisone for a year and a half for my interstitial lung disease after getting Covid, but it was also like my joints were finally lubricated. Especially when I was on a very high dose while I had active pneumonia. My sister has fibromyalgia and we both described our "widespread pain" to each other. Hers is definitely more muscular and responding to normal stimuli like hugs as painful. While mine is definitely inflammatory and joint pain. Then the muscle fatigue kicks in from supporting my joints. I have had opioids after surgery, which are not anti-inflammatory, and they barely touch my joint pain. While the NSAIDs, steroids, and DMARDs like Plaquenil DO help my pain. That's a big hint to me that this pain is coming from inflammation.
Thank you for this video! Helped me to explain to my family. FYI for those trying Plaquenil. It works but not right away. Stay with it. Took 8 months to reach my saturation point. My doctor in PA (not dr T) tried lower dose at first and I was taking it wrong. I was dividing dose through out day and it did not work. For me, have to take all at once. Life saver! Has reduced my deep tissue and joint pain immensely. Low dose of tramadol helps with surface flares as needed (mainly Winter) and am on anti inflammatory diet. You CAN have a life again! Don't give up!
Tim: very nice UCTD video. From one rheumatologist to another... you make me nervous doing videos while you drive. We can't have something bad happen to you. Our rheumatologist shortage can't bear to lose a rheumatologist. Keep up the good work (from a still position, please) .... Don Thomas, MD 🙂
@BigMantha it actually took two years of the wrong doctor just throwing hydroxychloroquine at it before I couldn’t take that anymore and my vision got the macular degeneration that can happen and she felt that was only medication available to help. Our area is not good for the best Dr.’s so went further away to a specialist two hours away to UK hospital and they have been amazing to find SOURCE of ailments rather than keep throwing meds at symptoms. I hope this helps and finds you well!
Thank you so much for posting this I have a great Rheumatologist but it's still a little confusing and there is hardly any information on UCTD at least that I can find
Hi Katie, I'm 19 too and have been diagnosed yesterday. Dr's are sending me for all sorts of scans and tests, did you ever have any scans or anything done? I'm trying to figure it all out. Thanks
I got diagnosed at 26, and was super allergic to plaquenil. I now have to take methotrexate injections once a week. It has really helped but it also has side effects. See an eye doctor on plaquenil, my Remy said get your eyes checked out every few years.
Ive been in that treatment for about five years and I dont have any side effect. I would recommend you to go to your oftalmologist once a year or twice a year to check any trouble on Time.
Would like to see a video on Mixed connective tissue disease . I have the SM RNP antibodies. There isnt alot of info on actual MCTD . I see alot of info on the different autoimmune diseases like Lupus, Scleroderma, and others but the Diagnosis of MCTD still seems unclear to me.
Just diagnosed. Wish there were more answers. Day 6 of plaquinil and I’m dreaming of less fatigue. Gotta keep raising my kids. Miss having energy. And of course I moved to LA From Seattle so I’ve got a lot more sun to deal with now but my joints seem happier in warm weather
I have actually been diagnosed with Mixed Connective Tissue Disease. How is this different from UCTD? My rheumatologist and I haven't discussed this because it was never brought up. I actually didn't think about the differences until I saw your video. Can you post a video explaining MCTD and the differences between MCTD and UCTD?? Thanks so much! Tina
Tina Miller If you have this disorder (like me), think you may, or have friends/family who suffer please consider helping increase awareness by taking a look at this petition. I am eager to increase awareness. Awareness about this disorder is VERY low. The Mayo Clinis is a very reputable and sort of GO TO place for facts and answers. Also, if you feel eager to increase your efforts, please consider reposting this and asking others to sign and repost. www.thepetitionsite.com/863/653/918/get-mayo-clinic-to-write-about-uctd-on-their-website/
@jpchefzgirl : MCTD is one of the well-defined connective tissue diseases (like lupus, rheumatoid arthritis, etc). It is often misdiagnosed and mixed up with UCTD, though. It ALWAYS has a high anti-RNP and patients have a mixture of Raynaud's phenomenon, inflammatory arthritis, skin thickening of the fingers, muscle weakness (myositis) ... but not everyone with MCTD gets all these. Incredibly important to get an echocardiogram yearly to ensure pulmonary hypertension does not develop
What about Ehlors Danlos type3 or or Joint Hypermobility syndrome. Which is basically eds3. I had been miss diagnosed for over 30 years the day before my 45th birthday I was diagnosed by a rheumatologist. She was very upset that it took this long. I've suffered with bowel issues bladder issues constant joint pain. Not once in those 30 some years was I ever asked if I was double jointed not once was I asked if my joints dislocate. Did I think to tell the Drs no because I have been able to put them back . My biggest complaint was my tummy and bladder and joint pain. I felt like they all thought I was a hypochondriac. I was so frustrated. 2 days ago I finally found the right Dr . Who listened to me too all my health history and now I know whats been haunting me all these years. Also did find out I have lesions on my brain . That's another appointment to the neurologist on Tuesday.. EDS needs to be brought to the attention of GP's
I think the difference is that the positive ANA tests with UCTD usually point to an autoimmune reason for the joint problems. ANA isn't specific to autoimmune disorders, there's healthy people who have positive ANA. But symptomatic people with ANA likely have an autoimmune disease. I don't think Ehler's Danlos alone would cause abnormal antibody tests.
Just got my Avise results. Have had a high titer, Speckled positive ANA since I was 12. I’m just now getting this as a result. I’ve had bouts of pericarditis , chronic UTI, interstitial cystitis, and always joint pain and chronic fatigue . Hoping that now that someone is taking me seriously as an adult will be better Thanks for the video
I've been in many health problems too AND doctors didn't care or pay attention at all until I had a lot of tests and background of an autoinmune disease. Hope you the best, this war isn't easy..
Would have been nice to hear why these people do not fit into other categories of connective tissue disorders as well, like Ehlers Danlos syndrome, Marfan's syndrome, Loeys dietz syndrome... Have they truly been ruled out of every connective tissue disorder know so far?
+Amanda Caddy there is no specific test for any connective tissue disease instead there is a list of criteria and you have to have a certain number of those to get diagnosed. For instance if there are 7 items and you need 4 items to be diagnosed and you only have 3 you go into the undifferentiated group.
I don't think people with the hypermobility disorders typically have positive anti-nuclear antibody tests. Whereas people with lupus, RA, UCTD, and MCTD do. Not saying a person can't have both. A test to see if it's autoimmune is also if our pain responds to Plaquenil or Methotrexate. I'd give up some of my other medications before I'd give up my Plaquenil. Never heard of people with Ehlers Danlos getting relief from that medication.
I have high rnp .8 and sjogrens1.02 ssa Rheum says nothing a matter with me yet . I have pain in my knee joints and ankles .I also have a odd pain in my arm right now that wont go away and shoulder
I really appreciate your videos. I've been going to the same Rheumatologist for about 10 years and I like him, but hardly get any info from him. He now has a partner so I get a mix. I see them every 8 weeks when I go for Remichade, but most of my complaints are not 100% investigated. I am treated for psoriatic arthritis. Since I started Remicade I have been getting these rashes on my legs that come and go. Usually go before my next round. I am 50, and sometimes I wonder if all the drugs and risks taking them are worth it. So many side effects I feel bad all the time but without Rem, and Metho, I am not mobile!
Thanks so much for posting ! Been diagnosed for 4 years now , and it's frustrating because most people and even doctors don't know what it is. One question I do have for you is I've had 6 bouts of aseptic meningitis in the past 4 years, can this be a symptom of the UCTD?
Thank you for your video. First I have to say....Please find a place to record when you are not driving. This week: Undifferentiated connective tissue disease is what I have been diagnosed with along with fibromyalgia. 30 days ago, my first FANA results were 1:640 titres - homogenous pattern and ESR 38 by pcp. Referred to Rheumatology.Rheumatologist results: 1:320 titres - homogenous pattern, ESR 50, anti ds dna 50.2 along with other test results that flagged either A or H but doc wasn't concerned with those. I am confused. positive DS DNA, I was told, was a specific test to diagnose Lupus. Not that I want Lupus, but I want the correct care and meds. Currently, I am on plaquenil (I seem to get nausea and light headed in the sun now), Cymbalta (to help with shakes and anxiety), and alternate ibuprophen 800mg and Tylenol 600mg for pain.I AM SCARED AND CONFUSED. May I add, I am 53 and from what I have read...even more confusing. Have I had this for some time and do I expect progress to worsen?
I was diagnosed with mixed connective tissue disease in 2011. 2014 my anti jo and ANA were positive. Now 4 years later I am patiently waiting on my Auto immune testing once again with a new doctor that’s holistic. I’m scared to death to even know what I have! I was told so many different things. Back in 2001 I was told I only had fibromyalgia with positive ANA and then 2011 was told I had the MCTD. I think I’m more scared because of the Jo 1 :/ I have googled way too much.. I still have no swelling. My symptoms are muscle pain, A little joint pain in the mornings but goes away after I stretch . I have been experiencing horrible acid reflux but I was also on progesterone injections my whole pregnancy and It was only five months ago. And I’ve dealt with panic attacks! Yeah I have no rash and never have. I do have reynauds , Antiphospholipid anybodies and MTHFR lol I sound like a hot mess but I still have never had issues with my blood clotting disorder either. And I’ve had three kids recently. So basically the only new symptoms I’m having are my reflux and anxiety which can go hand-in-hand with having a baby so it’s kind of hard to rule that out from an auto immune disease ha ha
Jon & Ash I have this disease it's so frustrating. I've switched to a gluten and lactose free diet which has helped my digestive problems greatly. For all my other symptoms I take Plaquinell and T.H.C.
I was just got diagnosed yesterday at age 33. I was also put on Plaquneil and yes it is scary. This video was very helpful, I cannot understand my doctor, he has a strong accent. I have a lot of Lupus symtoms and it runs in my family, as well as RA. Is it possible that is just not showing up on labs yet?
Kristin Sherman yes! The tests for RA, If I am correct, is a numbers scale and if ur a couple numbers below the cut off, it can't be diagnosed. Then years later you can test positive. I know someone this happened to and was thought to have FM before tests a year later confirmed beginning stages of RA. They had been just below the threshold for diagnosis a year earlier. Idk if that helps and I'm not a medical doctor so fact check that if u need. 😉👍🏽
I was diagnosed with UCTD in 2021 and started on Plaquenil and Methotrexate. July of this year, I was hospitalized and found to have aortitis, bilateral pleural effusions, and my CRP was 379.2. My rheumatologist diagnosed me with large vessel vasculitis. Do you have any videos explaining large vessel vasculitis that I could watch with my husband to help him better understand what I am going through? Thanks!
Seeing a functional medicine doctor helped heal my gut. I had SIFO, and no doctor bothered looking at my gut. The carnivore diet helped immensely. I'm off multiple meds and can move again without pain. Pain and fatigue are down about 80%.
I also wanted to add that I have severe osteoarthritis at 42 years old. Severe enough that I had to have my right hip replaced and waiting to replace the left one. I lost insurance due to having to give up my job.
What if those test came back positive with Anti Smith Antibodies? those are very specific to lupus but Doc said they wee not high enough so I recieved a UCTD Diagnosis. It was the VA and I dont trust them.
Also, haven’t found doctor yet that understands why so many of us get a pain around our ribs that hurts more as we breathe, what helps that, and do you need any tests to asses it further?
If you can, you should find a respiratory therapist. For me, my diaphragm had become weak from pneumonia. I did respiratory exercises to strengthen the muscles around my lungs. They hurt, but I found out the pain from breathing was also making me hold my breath and take shallow breaths. So it was important to strengthen my lungs even though it was quite uncomfortable. It's like exercising sore muscles.
Advice for people suffering from sticklers syndrome type 1? Can a Rheumatologist help? Ive had 3 joint replacements and it didn't go well with the knee... my spine is severe
Crush the pills up and swallow them with a spoonful of applesauce. Might taste gross. Not for extended or delayed release pills though. That's what I did when I was on a liquid and pureed diet after GI surgery. There's also sometimes orally dissolving tablets that work under your tongue. Or a compounding pharmacy can possibly make your medication into a suspension that you drink like cough syrup.
Rheumatologists are going to do a lot of blood work. My tests felt like blood donation, sometimes 9-12 or more vials. A lot of these are diagnoses of exclusion. We found my lyme disease through this testing, which had to be treated first, since it causes lupus like symptoms. Especially when it's gone untreated for years. It's treatable with antibiotics. It's important to rule the other stuff out like that.
You were seriously making a video while driving with your kids in the car? Based on this alone I would not want you as my doctor. Think about how this makes you look. My only hope is that you got pulled over and got a ticket for this but I suspect you didn't. Really reprehensible and dangerous behavior.
Unable to concentrate on your message. I was too distracted at the sight of watching you driving and recording, with your young family on board. Your method of recording is putting their lives at risk. Please stop this
Karen, live your own life and get your snout out of other people’s backyards. If you’re unable to comprehend his message because you’re too busy clutching your pearls, perhaps it’s best to recognize that you’re the problem.
