Видео

Are there english subtitles ? thank you

My doctor said that adding an additional medication to aspirin/levonox can cause the baby to half clif lip 😢

Had MCTD diagnosis 15 years ago, has been drudgery of constant aching and soreness, along with POTS dysautonomia and a myriad of other problems blah blah blah in January I did a three month stint of chemotherapy for testicular seminoma recurrence neck and back after having radical lymph node dissection last summer in my abdomen and near my renal artery that chemo put the MCTD in remission briefly and now, it is back with a vengeance I have lung fibrosis suddenly and my oncologist he spoke to my rheumatologist (unfortunately now retired and I'm without one) and they don't know if the lung damage is due to chemo, or MCTD, or what. prednisone past eight weeks lung shutting down and trouble swallowing now feel like a rag doll hard to move arms and legs, hard to bend over, squat down, hard to get out of bed, or roll over, muscles all weak and inflamed (I am not sedentary I'm pretty active considering this pain because activity makes it worse, but makes the pain slightly more bearable, so it's worth it, besides, I am in so much discomfort that I can't relax anyway so I'm always trying to stretch, exercise etc) have the worst feeling in my neck shoulders and hips and back, legs are numb, ankles are so tight they won't flex hip flexors and knee and elbow flexors so tight that I'm getting joint jam up all over my body and femoral impingement one one side from torsion had been on hydrochloriquine but stopped after doctor retired mostly I want to comment on the 'brain fog' ; It seems considerably worse to me than to call it that. Fog is pleasant. This is horrible. I feel like I got dropped on my head, can't clearly think except that it hurts and I'm tired and I need to lie down. Literally, like a person with hyperthermia, I'm constantly thinking I need to lay down and rest. Every damn moment. And have to tell myself if I do that, I will decondition. But I literally don't want to move. Hard to see the point living like this, except that I have adult children who I want to be around for that's it. The only thing that keeps me going, my kids. mind you I did go through chemo, but I felt like this before cancer, now, after surviving cancer, it's just that the MCTD is getting much much worse, fast so that's actually pretty interesting to feel it escalating Brain fog, not really a strong enough term for my liking more like cognitive impairment significant, memory significantly impaired by high pain and tension This much chronic pain with the weakness creates an existential hopelessness that your body just knows it's doomed and it's never going to stop hurting. This sucks hang in there, I'm sorry y'all are suffering like me I wouldn't wish this on my worst enemy

I was diagnosed with APS 4 years ago. Weirdly sometimes my test comes back negative and sometimes positive. What would be the best course of prevention before I undergo Plastic surgery? I do take XORELTO daily Thank you!

I'm 68yrs and I found out that I have anti phospholipid antibodies syndrome 2023 of September

Planet Ayurveda's treatment for Sjogren's Syndrome is amazing. It's the best I've tried, and it really helps with my dry eyes and mouth.

The EDS/HSD Society (in US) has a world wide registry of everyone diagnosed (and not yet diagnosed). They encourage everyone to signup in the registry as this helps with writing grants for funding, AI statistical searches as well as gives researchers a group of people who match their criteria for their research.

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. 💔

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. 💔

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. 💔

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. 💔

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. 💔

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. 💔

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. 💔

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. 💔

You can turn on captions (CC)right top of screen and then translate into your own language Je kunt bijschriften aanzetten (CC) rechts boven in het scherm en dan vertalen in je eigen taal Vous pouvez activer les sous-titres (CC) en haut à droite de l'écran et les traduire dans votre langue. Sie können die Untertitel (CC) oben rechts auf dem Bildschirm einschalten und dann in Ihre eigene Sprache übersetzen Puedes activar los subtítulos (CC) en la parte superior derecha de la pantalla y traducirlos a tu propio idioma.

The U.S. seems behind on educating physicians to recognize and perform simple test for this hyper mobility. Especially for patient safety and recommendations such as, what sports to avoid and interventions to protect yourself etc.

But I don't understand very well, how to arrive to the diagnosis?? If its so difficult and the symptoms so hard to make a gathering. I don't think that in any country the doctors could arrive to the right diagnosis . What kind of doctors should we consult? Thank you

Some doctors don't like to study "difficult, strange" symptoms so many people will be without the right diagnosis for a long time or maybe they'll never get the right diagnosis. It's easier to diagnose fibromyalgia so the doctors don't have to study, investigate the patient. 😢

Thank you for your excellent presentation.

Excellent extremely useful lecture for me as a rheumatologist. Thank you so much!

also, is there any link to Epstein bar reactivation from the big C and lupus?

Great video is there any link between drug-induced lupus with the prescription Effexor gabapentin and amoxicillin?

Removing my comment/question just proves the vaccine is the problem

Could we get on with it????

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.

Thank you for this presentation. I learned new things about this puzzling disease. I was diagnosed in 2017, after my ENT recognized the symptoms of my first 'flare'. I'm fairly certain that I had RP for years without knowing what was causing my health issues. Hindsight is 20/20, I suppose.

Thanks

I struggle working more days out than working

Thank you this!! We need doctors retrained to believe and find how to help..i do fall under depression 😢

I understand the medical gaslighting.. I severe brain fog but the worse is the pain in my throat or ears the pain in joints. My stomach is affected and my breathing (lungs) ANA positive. The worse is when they cannot further diagnose because there are no further markers in the blood. Most doctors are confused or don't know what to do for you. The tiredness is disabling.. I fall asleep right after breakfast 😮 and tired at 730pm like help me to my bed tired.😢

this diagnosis checks every symptom i experience...my ears can melt ice like a hot knife thru butter, not too mention they are floppy enough to be folded into my ear hole. my nose has large bumpy swollen places inside both nostrils... etc 🙁

I’ve had it for 15 years. Primarily affects my pancreas. I think my dad also had undiagnosed igg4 affecting lungs, kidneys and pancreas. He had pseudo tumors in lungs and one was fibrotic. In a flare now. Such a sneaky disease that makes you feel like crap.

This is phenomenal thank you so much for such a comprehensive, well-rounded presentation!!! And Huge thanks for including the QR codes!!! As a patient this is so encouraging and I hope it’s widely distributed among first-line medical professionals for a better understanding of RP. Well done, thank you!!

Appreciating these videos! (From patient side)

Thank you very much for all the effort and continuous work you do for us!

Where can I find LEAF? I googled and found articles, but if I want to use the tool, where can I find it? Thank you

Thank you, this has been very helpful in learning and understanding UCTD.

Excellent

This was really helpful, thank you

My brother is suffering from this Igg4 disease it effected his kidney, he loss his weight, Firstly we do not know whats the problem and we went to AIIMS Delhi, my brother was treated under Dr.Nitish. For delaying with getting reports and Doctor’s appointment my brother got stone(13mm)in kidney.My family were so worried for my brother and the disease.And after we decided to change the hospital and now he is getting treated by Dr.Abhishek Patil in Manipal hospital Bangalore, The doctor prescribed him Tocilizumab Actemra(it’s a injection)/Mycophenolate (its’ a tablet).The doctor recommend him to take any one of them either injection or tablet, we asked him and he told with his best to take injection.

It is hard to read the slides

I hope it's ok if I ask questions as I'm going along instead of one long comment. First question. With the inflammatory natural rhythms of the body would having an opposite circadian rhythm affect this normal cycle of pain? Because the patient sleeps more during the day and is active at night. Therefore their individual rhythm of offset from what the typical person would experience.

I have IGG4-RD as well. 29-year old female, living in Germany. My symptoms started at the age of 16 and I got my diagnosis just three years ago.

I am also suffering from McTD.. 😢

I am from Chennai my wife also same disease very critical can I help me some contacts no

Lupus class4 can control for medicine plz give the answer

my sister just got diagnosed. and she is thinking that this is a death sentence, and she is actively dying. does having RP a death sentence?

I have it and I'm always in pain. Its so confusing as to which one i have. My dr doesnt really know

Is there a document i can reference that states that all categories of costs should be included in the analysis?