Mixed connective tissue disease (MCTD): A 2023 update
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- čas přidán 4. 07. 2024
- This webinar is designed for health care professionals and will give an up-to-date overview about mixed connective tissue disease in 2023 from epidemiology to disease prognosis.
Speakers
- Prof. Benjamin Chaigne is a young MD-PhD, assistant professor, working in the department of Internal Medicine and Clinical Immunology of Cochin University Hospital held by his mentor Prof. Luc Mouthon and at Paris Cité University in Paris, France. He is specialized in the care of patients with autoimmune diseases and connective tissue diseases especially systemic sclerosis, mixed connective tissue disease, and Shulman’s disease which are his area of interest, expertise and research. Benjamin’s research, for which new collaborations are always welcome, include epidemiologic studies, clinical trials, and translational works.
- Dr. Kevin Chevaliers is an internal medicine resident. He worked with the team at Cochin Hospital (Paris) on mixed connective tissue disease as part of his medical thesis.
Still have bad days and flare ups anyone who can relate knows how bad it gets 😢 I’m tired of being seen as lazy when the pain is so bad all I want to do is sleep my life away but I still don’t give up
I’m going through the same but I noticed going to the sauna biweekly is actually helping me a lot. I have let my consultant know and she has arranged an appointment for an injection Ree not sure I’m gonna accept this but I’m heading there now
@@reereem5766how’d the injection help? What injection did you get and anything else helping? Thank you 🙏
Same, but it’s best for you if you come to terms that you are doing best for your body by resting when it tells you to. Don’t feel guilty! No healthy person would trade us if they had a chance. 🎉
I have RNP antibodies that hover around 10. This is often dismissed as "too low to be significant". However, my symptoms of MCTD are severe and require prednisone. I am not at all sure the threshold of 100 U/ml is valid. While lab values differ, Cleveland Clinic criteria indicated that any RNP antibody over 1 is "high" and "flags". Also some sources stated that RNP antibody level is not commensurate with disease severity.
I have suffered deeply for 2 years while seeking a answer I was given HEAVY resistance many many Drs only willing to draw my blood and say your results are healthier than mine and im a DR there's nothing wrong with you it's all in your head and too seek mental health counseling, today I was finally diagnosed with MCTD and it made me cry in happiness finally a Dr who would listen and not just dismiss my complaints.
Thanks for this video as I try to understand what's going on in my body
You are very welcome, thanks to you for your comment.
Thank you for sharing my 30 yr old daughter was recently diagnosed and she has suffered over 3 yrs GOD BLESS YOU IN YOUR JOURNEY
@@gretta52 I have found relief with corticosteroids instantly! I'm sure your Daughter will be placed on the same thing and find the same relief! 🙏
I just wanted to mention I've been doing a LOT of research on Auto Immune and there seems to be a lot of talk about Leaky Gut Syndrome and gut health in general as gut permibility allows things that should not to enter into our bloodstream and cause issues, my heart goes out to anyone who suffers as I know the mental damage and life changing effects it has all too well may God grant me the knowledge and understanding to heal my body and others who also suffer from medical issues.
I recently had a ana test come back positive and nuclear but all other connective tests were normal. They still want to run more, what worries me is the life expectancy:/ happy your daughter will get the relief she needs!
I started asking my Dr. questions back in 2008 due to stiff and achy joints. Mostly my ankles, hip and wrist. He ran so many different tests for me over the years until I moved in 2015, with no answers. Finally, in 2020 after seeing my second rheumatologist in 3 months, I was diagnosed with MCTD and Fibromyalgia. I too cried, feeling overwhelmed with emotions. I was put on the traditional medication, but that gave me no comfort and I chose not to go on the other stronger med because I have seen what that does. Someone said to me, it must not be bad enough otherwise you'd use it. Well, maybe I grew accustomed to the pain a bit over time, but those meds do a lot of damage to your organs. I have to choose my battles. I pray for everyone that they find what helps them! ❤️
The pain is so debilitating and trying to get providers to take a holistic and collaborative approach to my care has been humiliating and tiresome. I don't have RP so they're waiting for me to get worse, despite having PH, connective tissue breakdown, pelvic floor incidence, osteoarthritis, pericarditis...they are being so careful that I'm not getting proper treatment as they hope someone else diagnoses me. I hate that it's so rare because I am sure people like me have been suffering for years being unheard.
I have it and I'm always in pain. Its so confusing as to which one i have. My dr doesnt really know
I face itchiness after bath due to mctd 😢
Great work - makes me feel less worried
♥ happy to know it!
Does anyone know of a doctor who can treat me in SE USA. I have had 3 confirmed peripheral blood tests igg4 levels high. I have had 3 parathyroids and 1/2 of thyroid removed. I had a huge thyoma that grew up north sides of my neck removed at Callahan Head Surgery at UAB (univ of Alabama). I always have high ALT, Lipase, CRP. I had 2 VECTRA blood test with the last about 17 months ago in Highest level. Anemia and Fe infusions and .10% immature granulocytes. Adrenal gland removed on left kidney.
I had a hysterectomy about 10 years ago when this all started. NEVER HAD ANY covid immunization or illness.
Please if you know a doctor in Alabama, Virginia, Georgia, Maryland.... Anywhere in southeastern USA, PLEASE HELP ME. 💔
My boyfriend suffers from this disease and I'm really worried about him. Is there a way to reduce the frequency of flares without using antidepressants? He gets flares mostly in the mornings, as soon as he woke up.
Is there any possible way to cure this disease, or at least get rid of most symptoms?
Which anti depressants help your boyfriend? That sounds like a less side effect medication vs what many people are put on. Something I hadn’t considered or been presented with. Oddly, I did notice vyvanse greatly reduced my pain but I don’t love being on it.
@@MichaelMerritt Update... all of his symptons of the disease disappeared. We have a theory that he was misdiagnosed... thank god!! He feels so much better now.
I am from Chennai my wife also same disease very critical can I help me some contacts no