I have screloderma , sjhogrens syndrome and hoshimotos. My family doesn't believe there's anything wrong with me. It's very hurtful when I can't go shopping with them etc. And they give each other that look and then look at me as if I'm crazy. I have no support system .... I pray for them and myself

@ElainesAutoimmuneAdventure

2 жыл бұрын

Hi Lucy! I have Scleroderma (and RA) and I have found some great support groups on Facebook (they are closed groups so it’s private). I wanted to share with you in case you didn’t know. Autoimmune Disease is so hard because we often don’t “look sick” and those around us don’t get it sometimes but there are other patients out there who can relate. Hugs, Warrior! ❤️

@ConnectedRheumatology

2 жыл бұрын

I'm so sorry to hear this. It can be so disappointing when the ones we expect to be our support let us down. I love the idea of finding support via online groups, as mentioned! Another thing to consider is asking them to accompany you to your rheumatology appointments, or even make a special appointment just so your doc can help them understand. Hang in there!

@cutthecakecatering3578

2 жыл бұрын

I have MCTD and a few other recent diagnosis. I understand where you’re coming from. I go through the same thing with my family. It increases my depression. Even after being diagnosed, they still just think I’m being lazy or intentionally isolating myself. I’m 28 years old and it still hurts so bad.

@shanarstra2129

2 жыл бұрын

I feel for you but stay positive and its good you pray for them!

@reeciastoglin2631

2 жыл бұрын

Create you a “new” family who love and support you!! Birth families are sometimes the worse-walk away from their madness and have a happy life!

At 71, a rheumatologist finally diagnosed me with MCTD, and I couldn't be happier just sad at prognosis. I have a tee-shirt with the message: "Im not lazy! Im just very good at doing nothing!" LOL! There are over 100 illnesses that can be diagnosed under connective tissue disease. Some are intensified by autoimmune defiencies. Look it up! All these decades, I have dealt with each one peeking itself through the others. I am so blessed with knowledge and a reason for it all. I wasn't kidding or being lazy. My body hurt and made itself so very fatigued and in system-wide pain.

My appointment with my Rheumatologist is tomorrow. I hope she is as warm and personable as you. I appreciate you

Finally someone can explain my condition so well and make me feel I am not crazy

Glad I found your video. I was dx,d with dermatomyositis, local scleroderma and pulmonary fibrosis in 1996. I was 35 and about 10 months postpartum. Was on prednisone for 15 yrs. In "remission" for 11 yrs now. Been a challenge over the years. My own husband of 30 yrs said he doubted me at times. We have been separated for over a year now. My heart goes out to your followers who are in the midst of this journey. You can get through this, get stronger, but this is your new normal. I did not get 100% of my strength back. I have accepted that and I do the best I can, one day at a time.

@fortcastlevgn2368

Жыл бұрын

brooke goldner will get rid of it for you,, you HAVE TO GO VEGAN WFPB/RAW,, everything else FATS AND ANIMAL PROTEIN ARE EXTREMELY INFLAMATORY,, i knoew i had artritis and atherosclerosis (and my inflamatioons comes back ALMOST INSTANTLY when i eat fats (majority of fats are too high in omega6

@mpg.1

Жыл бұрын

I wish you so much luck and health. You may find it less stressful not having to try to be well to please others now. Stay strong

@boops1192

Жыл бұрын

Find a new doctor. You should not be on prednisone. There are many advances.

@mstee3355

20 күн бұрын

So good to hear that you’re still doing well with your pulmonary fibrosis💜💜

Hi, i live in Sweden and I got my diagnosis when I was 18 years old. But for 12 years it was set as Lupus and a suspension of MCTD and it was at 30 and thanks to my wonderful doctor I got who is very very thorough. The thing is though that I have tried sooo many medications and I only have a few possible treatments left. I just tried Orencia a biological medicine but I am allergic to it. But I know I am so fortunate to live in Sweden and having free Healthcare and almost free medications, because where my body is now and have been I probably wouldn't have survived if I didn't live here in Sweden. And I can't even imagine how difficult it must be for people who don't have the help that I have. But even with the Healthcare system here in Sweden it's hard to be heard a lot of the time. I hope all of you are safe and as well as you can be out there! And thank you for spreading the information about MCTD.🥰❤

I would love to see you as a patient. My autoimmune history started in the first year of my life. I’m now 68 and feel like I’m just going down quickly. My life has consisted of pain at every turn. I’m enjoying your channel. I just found you recently.

@patriciap.9034

2 жыл бұрын

I am sorry for you because I know what you are going through. I’m 75 and I started at age 14 with autoimmune disease. Praying and being with family keeps me going. Don’t give up, don’t worry, place your life in God’s hands. I just found this channel, also. God bless.✨

@kimberlynw1799

2 жыл бұрын

@@patriciap.9034 Thank you Patricia. God bless you as well. Today was a rough day. My family is wonderful especially my husband of 50 years.

@verlindaallen6299

2 жыл бұрын

May God be with us every day of our lives 🙏🙏💝

@mpg.1

Жыл бұрын

It is comforting to know others know pain. I was minding an elderly relative for friends when they were going overseas, she was 98 and I said does she have pain? They looked at me like I was crazy and said no she has no pain! Wow imagine being 98 and no pain.

@blazefairchild465

Жыл бұрын

I am wondering if any of the older folks 60+ plus have any of these things in common with me. Born pre mature Allergies to the point of using an epi pen about once a year or hospitalized for them.

Brilliant Chanel thank god for people like you, we salute you 😘

Thank you so much! I have been diagnosed with MCTD and you have provided so much understanding. I feel like I finally have the right vocabulary to communicate with my rheumatologist!

Thank you for sharing your knowledge on this subject. I’m waiting on my tests from my rheumatologist to identify the autoimmune I have. I’m not happy with my situation and definitely not surrendering to a diagnosis. Best of luck to everyone else in this boat.

Thank you for this explanation. I am a medical student and this really helped understand how patients deal with this diagnosis, as opposed to just reading sentences from textbooks.

@fortcastlevgn2368

Жыл бұрын

brooke goldner will get rid of it for you,, you HAVE TO GO VEGAN WFPB/RAW,, everything else FATS ARE EXTREMELY INFLAMATORY,, i knoew i had artritis and atherosclerosis (and my inflamatioons comes back ALMOST INSTANTLY when i eat fats (majority of fats are too high in omega6

@blazefairchild465

Жыл бұрын

Something to think about, in order for me to see my Dr. I have to plan ahead of time. The day of ,it takes hours to get me ready, getting me dressed in street clothing & groomed well. So my appointments are always at 2 pm,As I have to stop & rest between each item of clothing. I have my rollator & oxygen tank , so my driver has to be strong enough to get me to the car and my heavy gear loaded up. I get there early so I can relax my blood pressure down for a bit before I see the Dr. It is always too high after I walk down the hallway from the waiting room, I then have to wait longer because it's up too high, so they check me twice. When I finally get to see the Dr. I am sometimes so low on my blood oxygen I don't know why I came to see the Dr.because my brain can't remember when the satiation is low. So when the Dr asks me how are things are going , I say "ok, I am very winded I will ask my husband/ to explain." I look at him & he rolls his eyes 👀. Yes , I can understand Drs having a hard time with us old people.We forget to mention things, I have a list and write things to tell my Specialty Drs who I see every 3 months. Sometimes we remember it. It really sucks getting old, when your family thinks you are still fine and you are not. I used to care for my elderly relatives before they passed on, the medical staff would speak to them with respect & then repete everything to me as the caregiver on record. My husband & son are written up as my care givers, they both swear they receive no instructions even though I hear them being told. I had to ask the front desk for a copy that I wrote my husbands name on ,to have him sign ,he read the instructions or he would tell me it never happened. As a new Dr. Please know a good bedside manner is so comforting to someone in immense pain gasping for air, trying to explain why they have come to see you. Best of luck in your future,may it be 😎 bright!

Thank you very much for sharing!

very informative and calming after my appointment i felt overwhelmed and unsure

Good work Dr. Ortiz! Very informative.

I was so excited to see this video, but when I looked at your channel I actually started crying because we're both in DFW. You're not in like freaking Idaho or something, lol. I actually have a chance to see a doctor that clearly knows something about the issue I've been told I have. 😭😇

Wonderful explanation of this condition. I was dx'd 6 hours ago with this condition. It explains all my chronic health issues that 20+ years of PCPs were unable to catch. Thank you for explaining in such a clear manner. ❤🙏

So far everything was being blamed on Fibromyalgia, depression , anxiety, low thyroid, fatigue? until I started having trouble with balance affecting my balance. Now my Neurologist is doing many tests! A year passed,still no diagnosis. Very stressful!

@JessieLynnSummerville

2 жыл бұрын

that was me! I was diagnosed with fibromyalgia 4 years ago. Negative ANA.But now I have a positive ANA and high levels of RNP. Waiting on my first appointment with a rheumatologist

@anitareasontobelieve378

Жыл бұрын

Im so sorry. This is a response a year later, I just found this. I've been on the medical CD changer for years! Its annoying. Its ruins any quality of life. I can't mom bc of my body issues. I don't have the scleraderma, my collagen is so weak I dislocate things daily. I hope you feel better!! Be aggressive with writing your doctors in the portals and emails.

@fortcastlevgn2368

Жыл бұрын

brooke goldner will get rid of it for you,, you HAVE TO GO VEGAN WFPB/RAW,, everything else FATS AND ANIMAL PROTEIN ARE EXTREMELY INFLAMATORY,, i knoew i had artritis and atherosclerosis (and my inflamatioons comes back ALMOST INSTANTLY when i eat fats (majority of fats are too high in omega6

@SueT55

7 ай бұрын

Mold!

@kayeemerson6892

5 ай бұрын

I also have started falling

Excellent right on with so much of your video.

Thank you for sharing this informative patient information. I just rcv'd results from my ANA/IFA and have a f/u visit with my Pcp, She is referring me to a Rheumatologist. I now know when filling out paper work for new Dr, to be complete and never feel like some of my historys not important. Its all important. Thanks again!!

Thank you so much for this his video. My daughter in law is suffering terribly with many of the symptoms you talk about here without a definitive answer. I now understand that at any given season the driving force can change. God bless you!

Thank you for taking time out of your busy schedule to educate us. I am a nurse so found when I started developing various symptoms in 2011 that I had an autoimmune problem that was confusing, I started off with Sjogren’s symptoms with eyes so dry sometimes when I blink my eyelids would scratch my eyeballs. Then a hoarse voice, no saliva to swallow and painful lesions on my tongue. Next was neuropathy on my feet and unilateral joint swelling. One knee, one wrist, one elbow….yep. Then came burning rash spots on my arms. One day while walking up the stairs at the hospital my legs became so heavy it felt like I was dragging a ton of weight with each movement. It must be the flu, I thought. Then comes being outside in the summer and developing heavy painful legs only to find my thighs with cobblestone patches areas of reddish purple lines. My husband (a nurse as well) and German shepherd convinced me to continue going to a doctor for help. Finally an ANA test was ordered. I have been taken care of a by a rheumatologist who is pretty good. I think one symptom for me signaling an impending flare is insomnia, restlessness, and then just wanting to cry. Ugghh. Do your patients often complain of neuropathy? The neuropathy is now up to my knees.

@kristinecampbell5585

2 жыл бұрын

I had all the symptoms you described. After 15 years of being told it was in my head, it's fibro, it might be sjogren's, it's connective tissue disorder, then back to it's all in your head. Turns out it was Hashimotos Thyroiditis (autoimmune thyroid disease) was killing my thyroid. I never showed antibodies in my lab work. I had told 25 doctors over 15 years I believed it was thyroid disease. Finally I found out a simple ultrasound of the thyroid could show what was happening. I insisted on the ultrasound and found my thyroid had holes throughout, a tumor, nodules and a goiter wrapping around the back of my windpipe. Please get an ultrasound of your thyroid. Most doctors do not understand the thyroid, which caused me to lose my thyroid.

@johnshell118

2 жыл бұрын

@@kristinecampbell5585 Wow, thanks for sharing.

@corap123

2 жыл бұрын

Thank you for your story. I'm 47 with Bilateral Total Knee Replacements. Instability happened a year after to my knee, Revision Surgey was performed. A year after I had developed foot drop and low back pain, multiple stomach, skin and lung symptoms- I was told I am depressed because I am young with these surgeries. Finally after 20 years, I was diagnosed with MCTD/UCTD. I had recurrent dislocated right shoulder more than two decades ago. Amazing. All tests were normal for the previous years for Autoimmune, not until 2020 came.

@ashmitaghimire1478

Жыл бұрын

Hi john what diet do you follow can you get connected with me.

Thanks for this information 😊

Thank you for doing these videos in clear easy to understand language. It's so appreciated. I'll post a question in a different comment.

Thank you so much for this, its very helpful

Great video and a difficult topic to put into a box. Thank you. -Seattle 🇺🇸

I wish there was a diagnoses tests for Fibromyalgia

@TheIndecisiveWigWearer

9 күн бұрын

I was diagnosed with Fibromyalgia over 30 years ago and it is not classified as an autoimmune disease. I don't even think they had RNP antibodies blood tests back when I was first diagnosed. I am now finally seeing a Rheumatologist for Autoimmune disease. I heard a doctor once say to not accept a diagnosis of Fibromyalgia. Once you ae dx'd with it you become invisible and every problem you have will be thrown into that diagnosis. She also said it is more than likely a pre-disease. I've come to believe her as this is my experience.

I’m so glad I found your channel. I love the way you take your time to thoroughly explain all these diseases. I was diagnosed with Graves Disease at age 24 and I am now 59. Over the years I started with joint pain, swelling of my feet, knees, hands, wrists, and fingers. At first I was just dismissed to being told that it’s all in my head. I had pericarditis for the first time in 2001 and was told I had a fractured rib, until my internist did an echocardiogram on me. I had my second bout of pericarditis in 2004, which was a milder case. My third time with pericarditis in 2007, was the worst and I had to be hospitalized for a week. Still no one could give me a definitive diagnosis. I had seen so many different rheumatologists and never given any diagnosis except to take some antidepressants. I finally gave up and said I would just suffer. Then by 2015, I could hardly walk. I could hardly get out of bed. It was just hard for me to do anything anymore. I work for an Ophthalmolgist and some of my patients referred my current rheumatologist to me. She ran all kinds of tests, but said nothing was showing up even though I had a really high Sed Rate. She just decided to diagnose me with sero-negative rheumatoid arthritis. I have done research on my own and I just don’t believe that I have any type of RA. I’m on Xeljanz now and doing better, but I still get inflammation flare Ups in the most odd places and not bilaterally like RA. One finger will swell on one hand while my foot on the opposite side swells and hurts. It’s just so weird. I also have a very high (167) PTH Intact level and a severe Vitamin D deficiency. My calcium levels are normal though. I know without knowing all my information you can’t give me any diagnosis, but would you have any suggestions as to what further tests could be done? ANA normal, CRP normal. Sed rate always high. Sorry this was so long, but I would appreciate any input or suggestions that you could give. Thank you for your video and I just subscribed to your channel. Thanks again!

@samrobinson5130

Жыл бұрын

Do you have a history of dislocations?

@helainefossier

Жыл бұрын

@@samrobinson5130 yes. Well, I’ve had multiple fractures over the course of my life even as a child.

@sarahhoops9696

Жыл бұрын

Seronegative sjogrens? Or overlap with myositis, or even lupus. One tip make sure you are taking vit D supplements just found out I have insufficiency fractures of my pelvis due to vit D deficiency, been on & of crutches for a year with piriformis syndrome bilaterally at different times only pushing for pelvic MRI it came to light.

@iluminameluna

Жыл бұрын

The Vit D sub 3, really important. I can't go out in the sun at ALL. 10 mins and I have a fever, so I take Nature Valley's Vit D3, 5,000mg caplets, 3 every morning, and have been for the last 10 years, maybe a bit more. It blew my new Endocrinologist's mind when I told her how much I was taking, so she had me take the test, and yep, my level was just in the middle of the green. So it's good. I have had every single bone density scan come out perfect for over 2 decades... So, I've been taking vit D3 for a while now, and considering that I've been not only without a thyroid since 2003, then peri-menopausal, and finally just at 0 hormones because even my suprarenals are now gone as well... Yeah, one needs to start plugging the leaks somehow. Hang in there, folks.

@helainefossier

Жыл бұрын

@@iluminameluna wow! You sound like you’ve been through a lot like me. Best wishes to you!

Thanks Dr. Ortiz for the excellent explanation. I would love to hear more about overlap disease and how a rheumatologist determines which of the overlap diseases in a patient to prioritize for treatment. I’m so thankful for your channel and the good information you are providing to us patients. Thank you! ❤️

@ConnectedRheumatology

2 жыл бұрын

Great suggestion - adding it to the list!

@fortcastlevgn2368

Жыл бұрын

brooke goldner will get rid of it for you,, you HAVE TO GO VEGAN WFPB/RAW,, everything else FATS AND ANIMAL PROTEIN ARE EXTREMELY INFLAMATORY,, i knoew i had artritis and atherosclerosis (and my inflamatioons comes back ALMOST INSTANTLY when i eat fats (majority of fats are too high in omega6

@kaydi123

Жыл бұрын

Thank you. As wish all Dr's viewed its entirety. I am intuitive and frustration of all Dr's seen from 18-36 now. I enjoyed the much needed share w/ all who see patients! Its how at least I view those w/ lyme disease. If one knows or sees the micro only,the macro or more close solutions to symptoms or causes to again heal the most. at ease!! Than knowing one anti...is for that called Lyme. As its maybe one,or more things to regain healthy balance. And to get all known or know they enemy!! One antibiotic can not reduce natural ways to work while various or specific one's will help, rather reduce the bit of natural fighting bc gut flora off and Lyme is still an issue. Hope made sense. But....THANK YOU DAILY AND PLEASE SHARE WITH ALL!!!!! Appreciation and gratitude to you!!!!!

Very very useful!

Thank you so much for this information, from symptoms i am talking to my dr about myocits

Loved this video totally explains my daughters mctd diagnosed at 14 years old glad she is not alone!!!

@priyankarkachari4102

Күн бұрын

How much years she is right now?

Thank you for the onfo. I'm going through testing right now.

What a great video. Very informative and in layman's terms. You really have me thinking about whats driving my symptoms this week?🤔

I have MCTD, Scleroderma with Raynauds, Lupus, and Sjogrens. I knocked my knee last September and ended up in hospital. Surgeons thought it was infected based on bloods and did emergency surgery only to find it wasn’t. I was later diagnosed with “Inflammatory arthritis”. Whilst in hospital though, I was called the Unicorn Patient. Lol

@user-oe8cr1tz8v

Жыл бұрын

Same thing happened to me thank god i didn’t have surgery

This is such an amazing explanation! Thank you! First I was diagnosed with Fibromyalgia at the end of 2008. Then I was diagnosed with MCTD in 2013. Since then, I have also been diagnosed with Graves Disease and Thyroid Eye disease as well. I finally understand what MCTD is thanks to this video!!

Can you please make a video on undifferentiated connective tissue disorder. I recently got diagnosed with it and would like to learn more about it.

This is so interesting. My mom was diagnosed in the 90s with lupus but she had chronic cough pneumonia constantly... She's passed on but looking back I do wonder if she had mctd maybe...

Omy I am crying listening to my crazy story unfold. I struggled so much in my diagnosis journey. Military wife and moving alot didn't help AT FIRST. Eventually 7 years later an incredibly intelligent rheumatologist that resembles more of a club jumping beauty queen finally gave me this diagnosis. Er Dr's, family Dr's and even eye Dr's have argued that this is an actual disease. Thank you so very much for such an in depth description of such a complicated condition. Bless you!!

@RowesRising

6 ай бұрын

Fellow military spouse- now my husband is disabled vet. Still in the hunt for doctors and where we will settle down. One last move for our tired family. Thank you for your family’s service.

Thank you so much. For me was a big light and good question to take to my next doctor appoitmant.

So thankful I found your channel. I was diagnosed with Lupus - SLE - in 2006. I have seen five rheumatologists since then - all of whom told me I had SLE. All of whom TREATED me with SLE (with steroids and Plaquenil). Today, a new rheumatologist said, "Nope - you have MCTD." It's extremely confusing to me especially right now how this is actually possible.

@fortcastlevgn2368

Жыл бұрын

brooke goldner will get rid of it for you

@Yourpagetodayllc

Жыл бұрын

@@fortcastlevgn2368 I feel your pain, I have been told lupus, and mctd and everything in between... 20+ years of suffering ... and only getting worse

@darleneguevara6687

11 ай бұрын

What is Brooke Goldner?

Thank you this was very informative. The biggest downfall with these Autoimmune diseases is getting an accurate diagnosis. Then the treatments are mainly symptom based & the long term prognosis is a guessing game. We can see that now in such findings as with long term Covid patients having underlying Autoimmune conditions undiagnosed. We really need more research funding into All Autoimmune disease. Thank you

I wish I could get seen by you! No one can figure out what I have as a CTD. Been dealing with this for close to 20 years now. Extremely frustrating, as you can imagine. I am in Massachusetts, if you happen to be able to recommend a doctor to go to here, I will be eternally grateful.

I'm 45 y/o, 6 months ago, I was diagnosed with Raynaud's Phenomenon, then with MCTD. Dr still ruling out Lupus. Feeling better with Plaquenil treatment. Your videos are so informative, educational and helpful. Thank you.

@stacyfiddie9785

Жыл бұрын

I'm 45 and was diagnosed with MCTD / Lupus 3 months ago . Very confusing. Glad I found her channel too.

@fortcastlevgn2368

Жыл бұрын

brooke goldner will get rid of it for you,, you HAVE TO GO VEGAN WFPB/RAW,, everything else FATS AND ANIMAL PROTEIN ARE EXTREMELY INFLAMATORY,, i knoew i had artritis and atherosclerosis (and my inflamatioons comes back ALMOST INSTANTLY when i eat fats (majority of fats are too high in omega6

@claudiadj8548

Ай бұрын

I too have just turned 45 and have just been diagnosed with MCTD

Yep...started with severe joint pain and diagnosed with SLE, RA, Sjogrens, Raynaud's. 9 years later started adding limited scleroderma, dermatomyositis, psoriasis and finally MCTD. Also PAH & ILD. Crazy times! Thankfully, no kidney involvement! My rheumatologist told my I'm classic MCTD😄

Best explanation….will share with those I know instead of trying to explain how I have “bizarre-o autoimmune disease” and I swear I’m not lazy ;-) Love this video, thank you!

very interestiing

OMGGGGG a you’re the freaking best doctor to explain any diagnosis. I’m about all your videos. I’ve been diagnosed with Lupus. But my RNP came back the highest and my PCP think it’s this disease. But I don’t have any issues with lungs. Just kidneys,nerves and joints. So I had to look up. I was just diagnosed with neuropathy as well. I don’t think I have these disease I need to see a doctor like you to confirm. Your the best on KZread❤❤❤❤ 🎉🎉🎉🎉🎉🎉🎉

I was just diagnosed with MTCD and have felt very lost as to what is going on. I have done lots of research but it only seemed to confuse me. Unfortunately my rheumatologist is not as forth coming with information and feeling of hopelessnes and feel lost has increased. I want to thank you for this video as it's made me feel less lost and little more aware. THANK YOU

Tysm for the incredible video dr Love from Nepal ❤

Great video. I was diagnosed with fibromyalgia in 2016 and now recently diagnosed with undifferentiated connective tissue disease. Can you please do a video on that. It seems to run in my family, ie daughters.

My sister has just been diagnosed and is undergoing chemotherapy,we’ve both had all these “unexplainable” symptoms,both got diagnosed with rheumatoid arthritis,reihnardts and after 32 years she got the answer! I’m finally getting myself tested as I keep experiencing kidney infections also but it’s relieving to finally know what’s wrong!!

@dizzydwarf2002

5 ай бұрын

hi mimi my moms name is mimi! i was also just diagnosed with MCTD at 21 after years of contact body aches and pain every and extreme weight loss, doctors even told me i was anorexic even though i never forced myself to throw up nor purposefully starve myself now knowing what it is i finally dont feel crazy

Thank you for helping us...we need you desperately as drs are not the answer they don't help..

I sure would like to see more videos on the C1q igg autoantibody and its relation to Lupus nephritis.

And listening to you and your videos I realize other than the ANA panel and two times testing for Sjogren’s which turns out negative I have never been tested for any of these other antibodies and the rheumatologist want you to bring test with you rather than hang onto you and order the test they need

I was diagnosed with MCTD or Sharpe Syndrome 5 years ago with a pos ANA Blood Panel with Raynaud's Phenomenal, Fibromyalgia, Sjogrens, hypertension, over lapping Scleroderma/ lupus issues with skin, muscle, joints, gait, mobility and organ systems issues. When you're from a Rural area and going to a Rheumatologist from a small Practice, it's very hard to be treated for a specific diagnosis, when they aren't familiar with that disease.

Two rheums and one PCP diagnosed me with MCTD. The third rheum told me she didn’t think it was MCTD because my RNP titer was low positive (1.3-1.6 in 3 years). I was surprised because the other doctors never mentioned my titer not being high enough. Wonder if they diagnosed based on my other symptoms.

Late stage Lyme and co- infections have resulted in symptoms like these that change over time.

Love your videos. They have helped to understand a lot more. I have been diagnosed but trying to learn the questions I need to ask. Only one doctor here so very busy and he acts like everyone should know exactly what the disease is. I’m not sure if I’m supposed to take collagen and not take collagen what to eat not to eat etc. Very confusing. I have blood work coming up from my primary doctor what test do you recommend to know if there’s any of these other cross disorders that can pop up or what should I make sure are on my blood work? I am also Hashimoto’s and prediabetic.

This is interesting. I have Lupus, MCTD, sjrogens, and fibromyalgia. I never understood my MCTD very well.

@tracirobertson9343

7 ай бұрын

I’ve looked into ketogenic/carnivore on KZread to heal my autoimmune. Dr. Berg and Dr. Ken Berry and many others videos. Wish you well😊

I have a fibromyalgia diagnosis. But my I have wondered if I could have this or lupus. I wish I could see a doctor like you.

Thank you do much for breaking it down. I can send to my family do they understand what I'm dealing with everyday. I wish I was in your state. I need a doctor in Tampa that really knows about this. I am miserable.

I just realized this is what my blood work said. I can't believe I missed it.. My classical complement pathway is high as well... I have Raynaud's and my feet just started being cold in August.

Thank you for posts on you tube. It is very helpful. 😊 I understand your reluctance in talking about the treatments. Is it possible to post some of the possible types of treatments you have come across in treating MCTD? I am interested in knowing about how hydroxychloroquine can help the patients with MCTD and its side effects. I would really appreciate it. ☺️

I was resently diagnosed with this diseases mixed connective tissue disease

Thank you for your explanation of the disease MCTD, it really shed some light on understanding my condition. Now understanding what I have, what’s the best way to go about taking more active part in my health care, including eating right, treating symptoms and keeping in close contact with my rheumatologist?

@fortcastlevgn2368

Жыл бұрын

brooke goldner will get rid of it for you,, you HAVE TO GO VEGAN WFPB/RAW,, everything else FATS AND ANIMAL PROTEIN ARE EXTREMELY INFLAMATORY,, i knoew i had artritis and atherosclerosis (and my inflamatioons comes back ALMOST INSTANTLY when i eat fats (majority of fats are too high in omega6

Is Rheumatoid arthritis included in the subgroups? I have MCTD (high RNP) and elevated rheumatoid factor along with synovitis and erosions found on index finger on Xray. Thanks!

I have all those symptoms plus ibs and dr usually dismiss them as anxiety amd depression but my recent dr finally tested me for lupus however mctd showed on my bloodwork and not lupus

Thank you for the information. What is the life expectancy for someone with that diagnosis please?

Aaahhh. So glad I found you! I am 65 and was diagnosed with mctd when I was in my 40’s. I maintained with diet and exercise until I turned 60. I refused medication before that because my Dr. tried to treat me as if I had lupus. At 62 I had a debilitating flare and had to retire. I tried my Dr.’s medicine and had a bad reaction. After retirement I moved and have not found a Dr. yet. My research has led me to knowing that if my condition is not bad, I can be maintained on 10 mg of prednisone. At 5mg, it is not effective. I want to stop the prednisone but I don’t want a dr. to experiment on me. I’ve been on prednisone for three years. Do you know of any Dr.’s in Las Vegas that are knowledgeable? Or even in Nevada and California? I’ve researched and couldn’t find anyone. Thank you for your assistance.

I really wish I could find a doctor like you. I suffered for four years. Was diagnosed with PMR based on symptoms sixteen months ago. I am 56 years old. Moved to Alabama. Went to a new doctors hospital said that he didn’t think I have PMR. He said I’m to young. Spent fifteen minutes with me. Then ran a bunch of tests that didn’t point to anything. His nurse called and said I need to go on a steroid sparing drug. In the mean time I have developed swollen hands and wrist. I was on 8mg of preg. Stared feeling anxious and sick along with the swelling. So I went back to 10 mg. Felt good for three days. Now back to being sick and I’m lucky to get six hours of sleep. No joint pain. But if i do to much. My tendons swell and muscles. My arm after weed whacking. And after moving into my new place. My foot and ankle was so bad I went to the walk in clinic. They said severe tendonitis. Can’t get back in to see my doctor for three months. (He’s busy) Was thinking about going to Mayo Clinic.

I have seronegative RA and Sjogrens. Could I have seronegative SA or MCTD?

Doc, is Ehlers-Danlos three hEDS III involved in this?

Can pt with this disease have dental implant treatment? Will the disease affect bone quality eventually? Thanks

I can’t find a video on UCTD. I thought in saw something about it in your videos before I was diagnosed. Now I am and I’d like to review it again. Please if anyone knows where I can find it, let me know. There is not much out on it!

Is there a nutrition guideline for people with MCTD to help ease some of the symptoms!

Would u recomment lasik eye surgery with MCTD?

do a video on crp and sed rate and how its related to spondyloarthritis . i have psa and axspa and im on medication biologics and dmards and prednisone amd my crp is still 3 to 4 times normal. is this par for the course of psa and spa

I wish my doctor would give me a referral to see a rheumatologist. I have had spine issues since I was 12 for no reason (herniated/bulging discs, spinal stenosis, degenerative discs); I wasn’t an athlete, no falls or accidents. After my second microdiscectomy a few weeks ago now at 29, my doctor ordered a rheumatic panel and it was positive ANA with 1:40 titer, speckled. Doc said I was stable and didn’t communicate with me much after. I do experience terrible fatigue and joint pain most severely in my hands and knees to the point where I can’t hold my phone or drive for too long. I have other things that may tie in to some rheumatological conditions but I just want to know what’s really wrong with me. The other antibodies didn’t show as positive and my RF was 14 & anything over 14 being a positive. I don’t even remember a time where I haven’t felt daily pain and fatigue. Wish I just had some answers.

@samrobinson5130

Жыл бұрын

Look into Ehlers Danlos syndrome. Particularly h-EDS

@sarahhoops9696

Жыл бұрын

Have a think about sjogrens, ( systemic disease) same symptoms but remember 30% patients are seronegative that does not mean they are non symptomatic.

If my labs reference range for RNP is 0.0-0.9 and mine is 4.4, is that considered very high? Seeing rheumatologist at the end of June. Thank you for your videos.

Thank you for this post . My question is my daughter was Diagnosed with undifferentiated connective tissue. Is that the same ? ANA is positive . I know she is only 18 .

I started out with the unability to lift my arms up. it scared me. Then had severe Gerds. Next I couldn't get up out of bed and get to the bathroom without crying in pain. Eventually Diagnosed with Fibromyalgia secondary undMCTD. My symptoms include muscle spasms, rash on my face which was told was Lupus, swelling in fingers and wrists. My fingers turn a purple blackish color especially when stressed. I get tired real easy to the point of I can't stand it. I was given Gabapentin, Cymbolta and Lyrica, etc. I just gained weight like crazy. Nothing fixed my pain except when on steroids, which only lasted until the script ended. Stress from marriage/divorce/ loss of home/ low income. It sucks right now and I have to work like this. Getting up from a chair and can barely walk, rib/back pain/spasms, neck pain to the point of despair, shoulder swelling, hip pain/groin pain, degeneration of lower back. sharp jabbing pain like spears just at any time anywhere in toes/fingers/thighs. Co-workers calling me out saying I don't know what I'm talking about, so stop the stories. So angry with them and depressed.

@sarahhoops9696

Жыл бұрын

Just to add 30% sjogrens are seronegative. You need to find a doctor to treat you on symptoms alone unless you want a lip biopsy . They in the uk are now doing diagnostic ultrasound of salivary glands. I had it one of mine is atrophied, another active sjogrens seen.

@NatureGirlWOO

Жыл бұрын

I can relate. Especially the rib pain.

@romanysmith2644

Жыл бұрын

I totally relate to everything you have just shared. This is an awful illness. There are many days the pain is too much also my skin flares up especially over the joints that are so painfull. It is taking forever to get a diagnosis from the dermatologist & rheumatologist. Now it's Lupus and phenphigoid they are talking about. So with all the creams Steroids painkillers and weight gain I find it impossible to explain whats wrong with me. It's a horrible place to be. Wish u all the best.

@wolfhowl5691

Жыл бұрын

This sounds so similar to what I'm going thru! Started out just feeling like arthritis pain when getting to my feet. Once I walked a few seconds the pain stopped, mostly. My right shoulder & left wrist were sore at work (a packing company, so used tape gun a lot, and skidding boxes.). But for the most part that never bothered me. I basically was fairly healthy, flexible & had good muscle strength. I thought I had carpal tunnel in my wrist. Just slight flexing it was so painful. Then my right shoulder started bothering me. In the morning is the worst. I couldn't lift my right arm without pain all the way down my arm, and weakness. I used my left hand to lift my right arm. As the day went on, & I used my arms at work it would improve. ... Fast forward to today (it's February now & all this started around end of October. ... now both my shoulders & whole arms are SO sore thru the night & in the morning! I can barely pull my covers up, get dressed or undressed, get in & out of bed, reach up to high cupboards... even reach out to shut my lamp off. My knees go super stiff & painful - hurts to bend or straighten once my legs have been in a still position for a time. When I've sat for a while my leg bones hurt to first stand... the very tops of them where the bone attaches to the groin area. It's every day, all day. I've been taking 2 aspirin for arthritis, 650 mL every day for weeks. The odd day I'll try to go without them but I can barely function. Every movement hurts so much if I don't take them. I started out taking old anti-inflammatory pills I found from years before for my back. But my stomach started bothering me, so I went to the aspirin, and now I take one ibuprofen tab a day. But I dread getting up in the morning, & I feel tired all day. Can't be on my feet a long time, have to go sit for a while. I turned 66 in December, and I do have an appt. with a rheumatologist in March, but the appt. Was made since September & it's been agony waiting for a diagnosis, and I hate taking aspirin/ibuprofen every day. I know I'll have to go on medication one day, but I don't know if what I'm taking could cause damage to my stomach etc. One note... I suffered leg muscle cramps for 1-1/2 to 2 years every night. Sometimes 2 or 3 times a night. It is awful. I still get the odd one now & then, sometimes just sitting watching tv. I'm wondering if you have had muscle cramps too. I sometimes got them in my fingers - or even in my jaw when I yawned! Sorry for such a long note, but when I saw you say you couldn't lift your arm I had to add my 2 cents worth. This has been so frustrating.

I'm curious about something. I have been confirmed to have Lupus and also confirmed to have RA. Two days ago my blood work confirmed I now have MCTD . My question is how common is it for someone to have 3 different autoimmune diseases? And are there things I should really focus on to help my health ex: diet, exercise etc? I just feel so lost with 3 separate diagnoses, I'm not sure what to do or where to research. Thank you for any help you could give.

I have seen two rheumatologist and both said there’s nothing wrong with me. For the last 2 1/2 years I have had the most random symptoms along with fatigue, Reynards when I get real cold, cold sensitivity photophobic eyes, skin photosensitivity in which even with sunblock I get a sunburn and it will last for two or three months. The list of symptoms goes on and on including aches and pains the turnup in one area and go away to show up someplace else and meanwhile all my blood work looks good… my hope was doctors could catch whatever this is in the early stages and turn things around but it is not to be and it doesn’t work that way. When I went to see the last rheumatologist she looked at me like I was crazy. I have saggy skin where muscle used to be and just closing my hand tightens my skin to where I get white knuckles and my skin looks shiny on the outside of my hands while my palms look bright red. I found your channel by accident and have listened trying to figure out if there was anything to help me. I am just going to give up until I get better or worse which ever comes first.

@Mrs.Olsen92

Жыл бұрын

Hello Keren, I too go through this as of recently. It's mainly my shoulders and chest that gets super shiny and tight. If I don't moisture right after I shower, the skin gets so tight it could tear. I've been managing it pretty well now but I've notice light blotches on my face and around my eyes which sometimes get a bit puffy. I went through the tight hands several times but keep them moisturized. Two days ago my hands begin to flare and tighten but I caught it in time and they are already healing. I haven't been diagnosed with anything and will be seeing an Allergist soon but paying attention to my triggers has helped me drastically.

@brokentubing

Жыл бұрын

I know this is an old post, but I'm hoping you've gotten better

@Mrs.Olsen92

Жыл бұрын

@@brokentubing Hello. Yes I have! I'm so grateful 🙏🏾 I've seen my Allergist for testing. I've taken skin test on my back and arms but we didn't go over results yet. My Allergist wants further testing with food Allergens which I will do this Friday. My biggest help has been prayer, actually believing I will be okay and a simple skin regimen. I avoid things that I know irritates me and try my hardest to keep my stress down. That's hard, very hard but praying helps me with that. I do believe stress was a big trigger and I'm no longer at my job. Everytime I went there I had a bad reaction.

do you have any experience with Moringa helping connective tissue disorders?

What means overlaps? It’s negative test for that particular desease?

I have mcrd and hoshimotos - butterfly rash is terrible, hair loss is very bad and joint pain fatigue and depression. I am 59 and have fought this for years and I feel very defeated.

Benforthiamin 600 mg. With potassium and magnesium

I have been actively trying to figure out what my symptoms are from for several years - they are bizarre, come and go and seemingly unrelated. Have had Graves disease, controlled by methimazole for almost 20 years with little to no interruptions of my healthy full life. My RF measured 786 a year ago. Rhumatologist tested me for RA and hepatitis of various sorts, ruled them out and sent me on my way --- apparently with no other ideas on what could explain such a high RF. Next a dermatologist tested me for Sjogrens and ruled that out. Neurologist ruled out myasthenia gravis, although initially sure that's what it was. Gynecologist, oncologist and gastroenterologist all ruled out cancer (altho dermatologist has removed basal and squamous cell spots over the years so I think unrelated). My endocrinologist is going to test me for Fabry disease next - do you think that could be a possibility? We are all stumped. Could it be MCTD?

What about chronic itching and nausea? Suffering with it for about three years. Getting a ton of blood work next week to check for different autoimmune factors. Your videos are very informative. Thank you!

@AZ-pf8qq

2 жыл бұрын

My itch on my arms was caused from Nescafé rich instant coffee. Crazy right! Found this out once I switched coffees. Now no more itch

@sweetiepie7831

Жыл бұрын

Is it a whole body itch?

@subhasreedutta9835

6 ай бұрын

I feel itching on arms kness elbow thigh. Mainly hand and legs

@glo3912

24 күн бұрын

It may be your liver, primary binary cholangitis..it is an autoimmune disease

Is MCT connected to EDS and cvEDS?

My sister just got diagnosed today with MCTD.. I wondered how familu of those have been diagnosed were affected by their loved ones having this condition and things one can do themselves to prevent flare ups when dealing with this condition. I plan to do a lot of research.

Does your Ana have to be positive consistently with a positive RNP or can it be positive and then negative but with a continuous RNP antibody?

My MCTD driver is RA.Can you help me to find what I am going through?

I was diagnosed with MCTD after over 20 years of symptoms and suffering. I Have hair loss as one of my current major symptoms, as well as muscle weakness and joint pain (fatigue, muscle pain, swelling of the hands, rashes, allergies, lung problems and arrythmia). I have bursitis of the hip and a pinched nerve in my lower back (from a minor injury two years ago), I have been 2 years in PT (2x a week) for my pinched nerve, and hip treatment, I was wondering 1. what do you recommend for the hair loss and 2. is it because of my MCTD that my back and hip will not heal???? Soooo desperate for answers ... is there hope? I am at the point now where I am getting to weak to walk. Doctors seems to have given up on me.

Is it possible to have a positive ana with rnp antibodies for five years straight, and then later rnp is negative while ana is still 1:640. Or is rnp positive sometimes Ann's negative others?

Hello from London. I really appreciate your video so much information. I'm diagnosed with RA in 2018 I've been on Plaquenil leflunomide non of them worked. I found a group on the FB they use antibiotics protocol, especially the tetracycline Family mino and doxy and so many of them in remission for many years 20 and more. Any suggestion. Thank you

@claudiadj8548

Ай бұрын

Hi, I'm from Essex bordering London, fecently diagnosed MCTD. Have you found medication that works? I'd be interested to hear as haven't started anything due to waiting on MRI appointments. So much pain!

Since being on all the “normal medications” in reducing the inflammation from my RA I have progressively been going in the wrong direction , health wise. Stopping most of the medications didn’t help a single big so I’m back onto them all, once again. I developed CKD stage 3b, and my muscle weakness has led to both shoulders having completely torn rotator cuffs. During my RA journey complained to every doctor about hundreds of extremely painful nodules ranging in size from a small pea to a lemon on every aspect of my body except my head and neck. Some of the largest nodules have been surgically excised and diagnosed as lipomas with abnormal adipose tissue. The newest medical condition is leaning towards Dercum’s disease , also a connective tissue disease as well. Basically I’m a Rheumatologist worst nightmare. Lol! Have you experienced these symptoms in any of your older RA and fibromyalgia patients?

I was diagnosed with discoid lupus plus I have Renaud’s, pernicious anemia, and Hashimotos Hypothyroidism. Is it possible I actually have MCTD?

I did a liver flush by Andreas Moritz method and was under chiropractic care, the disease disappeared

i was told by a rheumatology doctor that mu MCTD is quiet,what does that mean,i have lupus and autoimmune disease but mild lupus