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!
@barbarajordan3145
6 ай бұрын
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.
@lorraineophoff4984
2 жыл бұрын
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
10 ай бұрын
Mold!
@kayeemerson6892
8 ай бұрын
I also have started falling
@Mamadriggs
2 жыл бұрын
My appointment with my Rheumatologist is tomorrow. I hope she is as warm and personable as you. I appreciate you
@J-ZIM
29 күн бұрын
Did you find out what you have, is it MCTD?
@Mamadriggs
29 күн бұрын
@@J-ZIM When they ran the full panel I have markers for like 5 out of 8 things but not anything that would be a full consensus to say THIS is what you have.... but I made a lot of wholistic changes in my life and things have been SO much better
@J-ZIM
28 күн бұрын
@@Mamadriggs that's great. Thanks for replying
@uhhmanda
2 жыл бұрын
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. 😭😇
@kellyhowarth7388
2 жыл бұрын
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
@shellyblanchard-t8x
Жыл бұрын
Same thing happened to me thank god i didn’t have surgery
@4.0toseniorpropb
3 ай бұрын
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
@zaidalozano5043
Жыл бұрын
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.
@aimeelee76
26 күн бұрын
Fairly sure it's the same thing as MCTD.
@CelineNg-i6w
11 ай бұрын
Finally someone can explain my condition so well and make me feel I am not crazy
@disscustinglybeautiful1652
2 жыл бұрын
I wish there was a diagnoses tests for Fibromyalgia
@TheIndecisiveWigWearer
3 ай 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.
@par4mika
Жыл бұрын
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
@MichiaMakes
Жыл бұрын
Find a new doctor. You should not be on prednisone. There are many advances.
@mstee3355
3 ай бұрын
So good to hear that you’re still doing well with your pulmonary fibrosis💜💜
@clsantiago21
Жыл бұрын
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.
@minaayasminn
2 жыл бұрын
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
2 жыл бұрын
Look into Ehlers Danlos syndrome. Particularly h-EDS
@sarahhoops9696
2 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.
@lowfatmofat2152
2 жыл бұрын
Brilliant Chanel thank god for people like you, we salute you 😘
@artemiswolf8039
2 жыл бұрын
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.
@manaseetelaang328
2 жыл бұрын
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!
@leeking6185
Ай бұрын
I am thankful that you really want to empathize with patients. You will be a good physician!
@manaseetelaang328
Ай бұрын
@@blazefairchild465 Thank you for taking the time to write this. I truly hope you’re doing okay. It must be really difficult to go through something like this but I find comfort in knowing that I can help people in two years. If you read this, I’d love to know how you are doing❤️
@manaseetelaang328
Ай бұрын
@@leeking6185 I really appreciate the kind words, thank you❤️
@idaisakssonnilsson2628
2 жыл бұрын
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.🥰❤
@elizabethsmith3416
2 жыл бұрын
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
@tashalodge1340
2 жыл бұрын
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...
@Enchanted_Hope
11 ай бұрын
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. ❤🙏
@InvisibleRen
2 жыл бұрын
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.
@Kenny-bj2zq
Жыл бұрын
Is MCTD just the new Fibromyalgia - I hate going to the Dr. I feel they all look at me crazy when I start describing my symptoms as nothing to point to any one disease. I have learned that Dr. are very structured and feel it's very hard for them to think outside the box and anything outside the box kind of irritates them
@mommyharris1111
Жыл бұрын
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.
@helainefossier
2 жыл бұрын
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
2 жыл бұрын
Do you have a history of dislocations?
@helainefossier
2 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!
@kimberlynw1799
2 жыл бұрын
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.
@candaceschermerhorn4078
2 жыл бұрын
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
2 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.
@sarahanderson7594
2 жыл бұрын
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!
@love2nurse2
2 жыл бұрын
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!
@ToanNguyen-kk1rs
Жыл бұрын
Can pt with this disease have dental implant treatment? Will the disease affect bone quality eventually? Thanks
@janmariablackwell8138
2 жыл бұрын
I enjoy and appreciate your videos but they are often too quite, even when the volume is on full.
@SilviaHernandez-jv2ue
2 жыл бұрын
I just got diagnosed last week, with mctd. Still so confused, it was so much to take in ... I'm so scared ..still don't understand what's happening to me .. I'm I dying?
@themagicians1122
2 жыл бұрын
No your not dying, Let's just try & live.. I Suffer with this tooo
@SilviaHernandez-jv2ue
2 жыл бұрын
@@themagicians1122 thanks you😊
@deecee901
Жыл бұрын
Mctd is one of the more stable diagnosis..i went from that to lupus.
@SkeensSeattleUSA
2 жыл бұрын
Great video and a difficult topic to put into a box. Thank you. -Seattle 🇺🇸
@tesswolverton6744
Жыл бұрын
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!
@xyzy5633
2 жыл бұрын
Would u recomment lasik eye surgery with MCTD?
@ElainesAutoimmuneAdventure
2 жыл бұрын
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!!!!!
@sharonvaldez9059
2 жыл бұрын
I have seronegative RA and Sjogrens. Could I have seronegative SA or MCTD?
@johnshell118
2 жыл бұрын
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.
@anitareasontobelieve378
Жыл бұрын
Doc, is Ehlers-Danlos three hEDS III involved in this?
@mtbroshow2355
Жыл бұрын
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😄
@heatherr1141
2 жыл бұрын
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!
@rdrydnghdwolfe1396
2 ай бұрын
There are painful times during my life with lupus where I can only say, “My meat hurts.” That is, *everything *, especially my arms and sometimes legs. Tendons, muscles, and everything in-between. I have additional serious diagnoses as well, including CVID, but I’ve always thought thought of this pain as part of lupus. Now I’m not so sure…
@kdani11307982
2 жыл бұрын
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
2 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
2 жыл бұрын
I know this is an old post, but I'm hoping you've gotten better
@Mrs.Olsen92
2 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.
@kdani11307982
2 жыл бұрын
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
@blytheangelpsychicmedium7458
2 жыл бұрын
I have ALL that you’ve mentioned but in addition I have a combination of Ehlers - Danlos Syndrome Types ll & lll - Type lll is now classified as Heds. My Doctor doesn’t think about ANYTHING that you are suggesting that they should consider.
@renee8813
Жыл бұрын
Same here I have Classic and Hypermobile EDS.
@Poppad-s8p
6 ай бұрын
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 KZitem❤❤❤❤ 🎉🎉🎉🎉🎉🎉🎉
@sharioncarpenter8293
2 жыл бұрын
Lately I have begun to have choking incidents. Sunday, my throat closed up and I could not breathe. All I could do was make a squeaking sound. I really thought I was going to die right there in my sister's kitchen! It was very scary for all of us! My husband started doing the heimlich on me. I don't know if that is what helped, but my throat relaxed and I could breathe again. I was diagnosed with MCTD 5 years ago. Could that be causing the choking and throat closing episodes?
@corinna4
2 жыл бұрын
Low dose baclofen helps me with choking. I take baclofen for stiffness and muscle cramps. I titer up and down to avoid my body getting used to it. During my time off of baclofen, I will choke on nothing and I feel like I'm going to die. I didn't know that it was a symptom of mctd until I researched. This is how I manage it. It's really scary.
@exceptionallyexquisite6884
2 жыл бұрын
A lightbulb went off in my head!!! Yes, I experienced this several times before I was diagnosed with MCTD. I think it may be a symptom. When you said you felt like you were going to die, I instantly understand what happened to you. I started with a low mucus diet and has basically stopped.
@sharioncarpenter8293
2 жыл бұрын
@@exceptionallyexquisite6884 thanks for your reply. I went to Digestive Health a month ago to have some tests done. However, that week I tested positive for Covid, wound up in the hospital, and am now detoxing from the 80mg of prednisone they had me on. I am finally down to 20 mg this week. Pray I don't maim somebody! 😅
@leonajones4702
2 жыл бұрын
Look up crackerjack esophagus
@mcleanhill93
9 ай бұрын
Does the choking happen while eating too? I've had food get stuck down in my esophagus, it happens every now and again but it always freaks me out. More frequently, it's just hard to get food down, it goes down very slowly and kind of hurts. But I'm not swallowing too much at once.
@jp-a1a729
2 жыл бұрын
Now I’m totally confused.! I was diagnosed with MCTD, but with RA, Sjogren’s and Raynauld’s not Lupus, scleroderma and the other disease you mentioned. Was I missed diagnosed?
@circleofleaves2676
2 жыл бұрын
Unfortunately MCTD often gets thrown around as a misnomer, so people end up with misdiagnoses. MCTD (and the 'D' in MCTD officially stands for disease, not disorder, as she's saying in this video) is a combination of Polymyositis, Lupus and Scleroderma/Systemic Sclerosis, in the presence of that specific auto-antibody, U1-RNP. It is not the combination of just any autoimmune connective tissue disease or condition. It is very specific. There is also something called UCTD, i.e Undifferentiated Connective Tissue Disease where a patient has symptoms that suggests autoimmune CTD, but labs and presentation don't fully meet the criteria for a specific disease. RA and Sjogrens together really suggests more of an overlap. Also a lot of doctors will diagnose RA based on symptoms alone - no rheumatoid factor, and no erosions on x-rays (sero-negative RA is a thing, but they at least need to see those changes on scans). It's pretty annoying when doctors get it so wrong. They should know better. Some people also get misdiagnosed with one of my autoimmune diseases, Antisynthetase Syndrome (which, like MCTD is the co-occurance of several specific conditions in the presence of a specific antibody).
@terrijenkins2795
6 ай бұрын
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!!
@sarahfowler9385
Ай бұрын
Hi I've just found you my general praticania is telling me MCTD is same as sjogrens which I've had 20 yrs last 3 yrs I've been really ill breathing problems blood pressure dropping my rhymatoligst said I had 180 speckle pos ana ro I suffer fibromyalgia nerothopy pituitary tumor ra osteoporosis 13 bulging discs EDS slipped disks enlarged red blood cells macrocytosis list goes on GP rang saying my red bloods were more enlarged 108 than ever n white blood cells 2.5 said I'm using azathioprine Luke chemo sge says azathioprine aint cheno it's used for RA said yes but have you got work mates who have such low white blood cells and high to infection I' have incontinence inflammation of bowel to is MCTD also separate to sjogrens as in it hardens joints can wrap around your lungs heart kidneys ect !
@cbutler9540
Жыл бұрын
My Rheumatologist says I have MCTD , Lupus, RA ,Sarcoidosis, Raynauds and Vasculitis .
@conorjordan19
3 ай бұрын
Lemme try you on my scenario that every Dr. I've seen can't figure out or it's too much for them. Umm.. there's certain stuff I'll just leave out but overall healthy individual who was 27 passed out first time in my life and went from there. Currently, I've been diagnosed with no cortisol which led to Addison's disease, and then in a span of 2 to 3 years over 95 kidney stones with prob. 35 lithotripsies, WPW 2 Ablations- 2nd Ablation led to 7-hour surgery massive heart attack left ventricle collapsed ends with stent and sent on my way, then diagnosed with heart failure which my eject. Infarction is 33% right now, most recently double kidney failure- on slow dialysis with them digging the clots out of the tube in hospital but didn't have to have permanent dialysis. There's more but that's the basic then my PCP ran the RA panel and I came out with this disorder. What's one question I could ask to help advocate for myself? Im now 34 dont look sick can play it off great until I cant. Anybody that may have any insight?
@DJ-nk4dq
5 ай бұрын
Is it possible to have MCTD without U-RNP1 antibody? I have been diagnosed with MCTD, after first being diagnosed with lupus, but I don’t believe I had that antibody during the initial investigation
@FadingAway10
Жыл бұрын
Do you really only live 5-10 years with this disease ? 😪 I googled it and it said only 10 years you can live after being diagnosed
@jcoleman4769
Жыл бұрын
I read that as well...
@purplestar299
2 жыл бұрын
I have all the symptoms (rash, swelling, joint pain, fatigue) but only inflammation is showing up in my bloodwork no ANAs
@Daynish648
6 ай бұрын
Same for me, how are you feeling in 2024?
@carlaprice.Nanaof2
2 жыл бұрын
I’ve had fibromyalgia and cfs for 25 yrs, I’m now 57. I was diagnosed with hasimotos thyroiditis about 10 yrs ago and now after I was in a major car wreck in March last year, a semi hit me twice, the damage was four herniated disks. I now have the Mylar rash and myositis symptoms and was wondering if the trauma and stress of the accident could have brought about my new autoimmune issues?
@meekellassidddiq4608
2 жыл бұрын
Good question. It was certainly a shock to your system.
@rosemarybrinkman4479
2 жыл бұрын
Well, in 1991 I was diagnosed with Fibromyalgia. In the 70's I was diagnosed with Rosatia. In 1989 I was diagnosed with Hashimotos Thyroiditis.I never heard of Fibromyalgia so I red books went to support groups and a weekend seminar. From what I understand is that especially greats stressors can indeed trigger an autoimune reaction and that it maybe an od diagnosis you have been trying to manage or it may be a new autoimune response. Great stressors do include in our everyday activities such as losing a job, any kind of accident, losing a loved one, divorce,the flue/cold or sore throat with fever, even getting married. The emotional triggers often the physical response. In fact often accidents can even cause difficulty in sleeping which often is a symptom of the autoimune system. When I had a serious slip and fall in Jan 1990 my complete system was changed. The Rosatia had subsided the Hashimotos was addressed and the the accident and the pressure of getting married was just too much I guess hence the Fibro sprung up and until Lyrica just used the Ibuprofin to help me. I have found that shock's to ones system do indeed have an effect on our physical condition.
@NancyEllenB
2 жыл бұрын
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
Жыл бұрын
What is Brooke Goldner?
@reinettbernardo2779
Жыл бұрын
A rheumatologist diagnosed me with MCTD in 2017. Even though l had a negative ANA test. Last year l got tested again at a clinic, still negative. Coming Monday l will be going for another test & depending outcome they might not refer me to government hospital for care. I am unable to work due to severe vertigo. I have stiffness & swelling in joints of fingers & other joints throughout the day. Can one have a negative ANA but have MCTD or arthritis? Greetings from South Africa.
@leameiser657
2 жыл бұрын
I saw a rheumatologist first dec 17th this year because of an inflammation in my back. My blood test came back with a negative HLA-B27, CRP 13, ANA is always between negative and 1:160, Anti U1 RNP positive. An MRI of my sacroiliac joint didnt show any signs of inflammation. I got the blood test this morning and I don’t know if I should contact this rheumatologist..
@leameiser657
2 жыл бұрын
Oh and my C4 is a bit too high
@purplestar299
2 жыл бұрын
Hi just wondering if you got an answers? My ANA also has always been negative.
@aminers6872
2 жыл бұрын
This is a positive analysis for me. Is it possible for a corona vaccine to be a positive reason? I want to know because I am not comfortable with myself
@lynngabel8894
6 ай бұрын
Yes i think the covid shot started this nightmare
@angellanabb3662
Жыл бұрын
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.
@Noctessa
Жыл бұрын
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
9 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.
@manikeshvardoost3703
2 жыл бұрын
I did a liver flush by Andreas Moritz method and was under chiropractic care, the disease disappeared
@tammyfurrey6241
2 жыл бұрын
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 .
@kathleencorrente5917
2 жыл бұрын
Kimberlyn I would also love to get an appointment and become a patient of Dr Ortiz (Elizabeth) I hope I am spelling her last name correctly. I can not find a Rheumatologist where I live as great as her. What I can say is I have a high stress level and pain is so real yet my doctors make light of it. If you go to the ER in a flare they look at you like in is all in your head. I only had one doctor respected my pain level and that is because his mom had lupus. I hope you do not mind me responding and agreeing on your post.
@jaynpenny
Жыл бұрын
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.
@leslierock7019
Жыл бұрын
What a great video. Very informative and in layman's terms. You really have me thinking about whats driving my symptoms this week?🤔
@damariscruz7263
2 жыл бұрын
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
4 ай бұрын
I too have just turned 45 and have just been diagnosed with MCTD
@swaziswimmer
2 жыл бұрын
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?
@daisyhall9932
Жыл бұрын
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
@debm1800
Жыл бұрын
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.
@tracymolaski4479
2 жыл бұрын
How about UCTD???
@CynthiaSusanOrtiz
2 жыл бұрын
My RNP was 5.4, my ANA was pos, I'm going to start Hydrochloroquinine and my Rheumatologist is going to run more labs I'm newly diagnosed after years of being unheard and told I'm too old at 57 to be diagnosed.
@deecee901
Жыл бұрын
Same here. Symptoms started at 38
@joshuamyers7993
Жыл бұрын
My RNP is an 8.0 I also have to go see a rheumatologist.
@simplyjay4260
2 жыл бұрын
My labs range was 0.0 - 0.9 … my RNP was 3.4 and it said high on the results.. however my rheumatologist said it was a “false positive” but never explained how and why it was false.. I also developed Raynuads the same week the results came back.. Over the years I’ve had positive Ana test and negative Ana test.. I was told the positive ana test we “false positive” as well.. I have all kinds of symptoms and I keep getting a fibromyalgia diagnosis! Other bloodwork I looked at was low or high but she never mentioned it to me.. I only saw when I looked at the results myself.. should I get a second opinion..
@corinna4
2 жыл бұрын
Yes, get a second opinion.
@deecee901
Жыл бұрын
They'll call it a false positive if your ana is low..however simalar experience here but......once the flares started happening they can no longer blow me off.
@bbyskittles91
Жыл бұрын
I have had the exact same experience. I had to look to see if I wrote it and didn't remember lol. Have you had any updates? I go see a new rheumatologist in a month and I'm hoping I get clearer answers.
@moquimaids
Жыл бұрын
I sure would like to see more videos on the C1q igg autoantibody and its relation to Lupus nephritis.
@VeronicaHernandez-zo4dv
4 ай бұрын
Anyone here that used labcorp an was diagnosed please let me know what was your numbers in the test results
@sapanaacharya2587
2 жыл бұрын
Iam 23 years old ....iam facing the some symptom like hair loss , changing hand colour red and white and homoglobin also desrese ...may be is this SLE symptoms ??? or what
@deecee901
Жыл бұрын
Mine was.
@Anetekonjo
2 жыл бұрын
So sorry your family is not supportive. Maybe they can come to your appt with you. Stay strong
@dizzydwarf2002
8 ай бұрын
very informative and calming after my appointment i felt overwhelmed and unsure
@TomBarkho
20 күн бұрын
Young Jose Rodriguez Karen Anderson Charles
@iloveyouyoulovemeify
2 жыл бұрын
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
@AlexanderThompson75
2 жыл бұрын
My RNP was 6.8 and the lab range was to 0.5 but my dr never mentioned this disease. When i was teenager i was told i have lupus but as an adult its not clear whats wrong with me. Annoying
@meekellassidddiq4608
2 жыл бұрын
Wow, keep advocating for yourself.
@deecee901
Жыл бұрын
Wow..what the heck. How do you feel?
@dbklyn97
Жыл бұрын
This is interesting. I have Lupus, MCTD, sjrogens, and fibromyalgia. I never understood my MCTD very well.
@tracirobertson9343
11 ай бұрын
I’ve looked into ketogenic/carnivore on KZitem to heal my autoimmune. Dr. Berg and Dr. Ken Berry and many others videos. Wish you well😊
@anilamulla1803
Жыл бұрын
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
4 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!
@kdani11307982
Жыл бұрын
Sadly, rheumatologist will not diagnose anyone until their bloodwork is so bad there’s no turning things around except just trade symptoms. I have four years worth of symptoms, but my blood work is not bad enough to call it anything. Positive ANA, positive RNP antibodies, and I have Hashimoto’s so positive thyroid antibodies too. I have decided to not go to the doctor anymore. Just tired of it all.
@JC-justchillin
Жыл бұрын
You sound very much like me. I have had symptoms for over 20 years. Diagnosis has been limited and unconfirmed including sjogrens, raynauds, inflammatory arthritis, probable Hashimotos (def hypothroid). Always positive ANA, also high positive for RA once but not 2nd time, moderate positive RNP. The last rheumie I saw was such a jerk...didn't even bother to call me with the positive labs. My pulmonologist (I have chronic shortness of breath with minimal exertion) consulted with a rheumotologist and said she would dx me with MCTD based on symptoms and labs. But who knows? Now I don't even have an MD for primary care. I decided to just live as healthy as possible and "just deal with it" (as I was told to do with a bad bout of autoimmune vasculitis because my numbers weren't bad enough to treat). I am pretty stable but it takes very strict adherence to diet, low stress, and daily exercise. Good luck to you and try to take good care of yourself.
@kdani11307982
Жыл бұрын
@@JC-justchillin i’m not a doctor but with all the reading and research I’ve done it certainly sounds like mixed connective tissue disease also known as overlap syndrome. I got a CT scan back a few days ago and I have enlarged submandibular glands, but medical care in Florida. Here is so bad there were no measurements done on my thyroid, nodules or on these glands. I don’t care if I ever go have any more testing or see another doctor! Disgusting! America is dead last of all the industrialized countries in healthcare and Florida depending on who you want to believe is either 39th worst or 41st worst. down here they have to work at it to be this bad. I think before I go to sleep tonight I will say a prayer for all the people like you and me.
@JC-justchillin
Жыл бұрын
@@kdani11307982 There is an excellent rheumotologist in Stuart FL, Dr Houri. He has taken great care of my son and daughter and when I saw him early on he was compassionate and totally listened to me, not dismissive like so many. He def thought I had autoimmune disease and was the one who said likely sjogens, inflammatory arthritis, and raynauds. My son has AS and psoriasis ( lots of autoimmune disease in my family); part of my overlap is AS-like and I am HLA-B27 positive...so who knows. One of my visits down there I might see if I can get in to see him again. Don't know if he's accepting new patients but I give him a 5 star recommendation.
@maryholzhauer727
2 жыл бұрын
I was resently diagnosed with this diseases mixed connective tissue disease
@krisa717
2 жыл бұрын
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.
@Adore7_AUM
5 ай бұрын
Hopefully you can answer this question. If you were on mycophenolate (Myfortic, immunosuppressive med) for over 5 years for an unrelated reason can can mycophenolate affect your ANA postive speckled 1:160 Reflex test?
@FadingAway10
Жыл бұрын
What is considered a high RNP antibody? Value *1.4High My SED rate is 36 CENTROMERE TITER 6.5
@joyrees7966
Жыл бұрын
I have MCTD spondylitis, LUPUS, SJOGRENS, ARTHRITIS SYSTEMIC SCLEROSIS and Sarcoidosis since tean to age 80 I lean on the Lord as NSAIDS Caused severe hemorrhaging
@crystalgilliam3006
2 жыл бұрын
Is MCT connected to EDS and cvEDS?
@sawsanfethi102
2 жыл бұрын
Hello doctor plz i will appreciate it if u answer this my ana test come weakly postive at 1:100 my doctor said no need to do ENA test and DNA test since the result is not significant and asked to repeat the test after 3 months. I only have joints pain please do I need to worry ?your opinion please
@ConnectedRheumatology
2 жыл бұрын
It can be so confusing, I know. In general, "low positive" ANA results (however your lab defines that) only need to be chased if someone has many autoimmune symptoms. As frustrating as it can be, time can also be a very useful tool for both you and your doc in judging how to think about ANA results. Joint pain can come and go for a variety of reasons and watching how you do, (does the pain get worse? do new symptoms pop up?) can be very telling. A good symptom diary between now and your next visit will help you and your doc alot when trying to decide what the best next step is. Hang in there!
@kristinecampbell5585
6 ай бұрын
I know this video is two years old, but honestly all the effort to single out which symptoms fall under which defined label aka "disease/disorder/syndrome is a waste of time energy and money. Just put that time, energy and money towards finding a cure for Autoimmune disease. Period. Most of us are gaslighted by doctors, I was for 20 years. I had been labeled with low thyroid function kept on minimal t4 for 14 yrs. I finally read I could have an ultrasound of my thyroid. I had to fight my endo for this test. Well low and behold the test revealed my thyroid was destroyed by Hashimoto Thyroiditis. Holes throughout the gland, tumor, nodules and a goiter wrapping around my windpipe. Had one "professional" had this test done throughout my 14 yrs of hell, I still might have my thyroid! I am one of the lucky ones that is seronegative, nothing shows in my blood work. I have been told I have possible Fibromyalgia, MCTD, Sjogrens, but I had been told it was all in my head more times than I can count. Why seek to label us if you have nothing to offer that is worth OUR time money and energy?!!
@cujet
Жыл бұрын
I test positive for anti RNP antibodies, but not at a high titer, always over 10, and generally under 25. Some labs show 'neg' as they have a high threshold. Cleveland Clinic says a positive is over 1.0, the quest shows a neg result as it is under their threshold of 20. HOWEVER, I am reliant on Pred to be functional. Can't stand up, bicycle rides will be 4MPH instead of 17, unreal fatigue, left eye inflammation, and fingers/toes turn red, then white/thick skin, cracks like crazy (requires gloves all day) Yet, no official diagnosis of anything. I need better treatment.
@lizbalsillie3827
9 ай бұрын
I have MCTD , diagnosed 3 yrs ago. I suffered from tiredness and weakness in my muscles, I found it difficult to cut my dinner with a knife. Anyway it’s under control with hydroxychloraquin. I have this very strange symptom that if I have a shower after coming out I get INTENSE itching all over to the point of drawing blood, it last 30 mins, it’s horrible. So I don’t have showers at all. Has anyone else suffered this and any tips to go back to showering again. It’s not products I am using or the water as it happens wherever iam in the world. Thank you.
@fluffybanden
9 ай бұрын
Hi I have been diagnosed with MCTD Before I was diagnosed I had severe problems with my bowels. But the doctors have found nothing in my intestines. 2 months I can bleed daily from my bowels. But they conclude that there is nothing in my intestines. 6 months before I got my diagnosis, I became very short of breath, woke up in periods not being able to catch my breath. Had to sit up and sleep because I couldn't catch my breath. On a scan they found some fluid. But they haven't found anything in my lungs. I am in treatment now and it has helped with my symptoms. But I'm scared. Can you feel "attack" in body parts before the doctors can measure it? Because I'm afraid if what I'm feeling and experiencing is a precursor ... does that make sense?
@joannemurray3384
Жыл бұрын
I was diagnosed with discoid lupus plus I have Renaud’s, pernicious anemia, and Hashimotos Hypothyroidism. Is it possible I actually have MCTD?
@Danieltoshsplumber
Жыл бұрын
Wow I have MCTD and noticed my shoulders are so weak. A gallon of water makes me shake. It’s crazy because I used to be at the gym 5-6 days a week and now can’t barely do anything. Was on plaquenil but it seemed it wasn’t working so I stopped taking it and haven’t been taking anything just dealing with the pain. I feel the same with it or without it.
@anitareasontobelieve378
Жыл бұрын
I can't understand that blood tests are not dome immediately when a person has joint pain, weakness and aucj. So many women seem to have this and there are so many women PCPs.I just don't understand why it takes so long to get these things diagnosed. we have Ehlers-Danlos of many kknds, lupus, this MCTD and so many inflammatory illnesses it seems like an annual check up should look for this stuff.. They want you to have a camera up the texting and picture s with strong cancer causing x rays of them breasts but cannot do blood work to head this commons types of problems of Lupis and other inflammation diseases off at the pass and keep womem from getting bed ridden? I know if this hit more men they would check it as routine once a hear at the annual checkup. You know it too. You don't make the policies, can you speak out and and help effect change for women? We don't want to be down and out and people just think we are lazy or depressed. That's awful..you're depressed... No I'm weak and can't do.stiff...dealing with misdiagnosis will make a.person depressed NC of the situation. Can hou, will you, champion testing this from the late twenties on? NC all these things start earlier than most folks think. A lottle.swelling in a hamd..I cam deal with it. Take.a.tylenol. Gosh I'm so.tired I can't grocery shop...delivery happens to deal with it. Help us, please!
@lejlamccormick6176
Жыл бұрын
Here out of desperation. I have been diagnosed with MCTD and have been prescribed Hydroxychloroquine along with muscle relaxers and I am not feeling any relief/better. I had my daughter two years ago and prior to having her, I never had any of these issues. I was told at times pregnancy can trigger certain hormones. That's that! Taking medicine every day without getting better and I am feeling frustrated and hopeless 😞
@Yourpagetodayllc
Жыл бұрын
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.
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