hello, can citizens of another country come to you for treatment?
@Itsthatchaar5 күн бұрын
Mine can come back every month, taken 18 years to get diagnosed.. I’ve just been given high dose of steroids to take and ween down over 7 weeks, I used to take time off with as it would swell up my ear face and neck., until the fluid build up was too much and would rupture the skin slightly in order to start leaking. I now just go to work like this depending how bad it gets.
@СандраСандра-г7г4 күн бұрын
All these 18 years, what deviations did you have?
@Itsthatchaar4 күн бұрын
What do you mean? .. sorry I dont understand
@СандраСандра-г7г4 күн бұрын
How did the disease manifest itself over the course of 18 years?@@Itsthatchaar
@СандраСандра-г7г4 күн бұрын
@@ItsthatchaarHow did the disease manifest itself over the course of 18 years?
@Itsthatchaar4 күн бұрын
It didn’t, it was always the same.. from the beginning
@mcawesomest112 күн бұрын
The fatigue and low entertain with random body aches and pain is horrible
@debbiehardy896213 күн бұрын
I cannot understand you.
@EDSandHypermobilityScience16 күн бұрын
🤦
@Kehindeodumosu12618 күн бұрын
Thanks
@SimonDingleyАй бұрын
Could you make the slides available please as the quality is poor in the video?
@dcantwell1192 ай бұрын
Perhaps it’s under diagnosed in US because they are not familiar with it.
@Truerealism7472 ай бұрын
No mention of autism the course
@tracybass65122 ай бұрын
This is what I have❤❤❤❤❤
@susanWilder21752 ай бұрын
What a compassionate doctor. Thank you.
@hemlata21783 ай бұрын
Contact
@reneehughes69853 ай бұрын
Nephew 14yrs diagnosed. Had 2 jabs. I bet your getting alot more cases now. Bet you didn't even look at the experimental meds everyone was forced to have. Shame.
@dawn119794 ай бұрын
Are there english subtitles ? thank you
@katiemarie32654 ай бұрын
My doctor said that adding an additional medication to aspirin/levonox can cause the baby to half clif lip 😢
@hehunches4 ай бұрын
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
@salinityandbrothermom12374 ай бұрын
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!
@elainemcnabb25875 ай бұрын
I'm 68yrs and I found out that I have anti phospholipid antibodies syndrome 2023 of September
@Nisha-kl8rl5 ай бұрын
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.
@maryr75936 ай бұрын
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.
@kimberlina686 ай бұрын
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. 💔
@florabraswell-nm1re4 ай бұрын
Prayers Sweetheart, l am also suffering from MCTD syndrome and eds Ehlers danlos a lot of mass cell allergies,sick with symptoms as a child growing up l have through the years always trying to explain to Doctors how l have felt , put up with gas lighting and all kinds of abuse had scoliosis hyper mobility gastrointestinal issues gallbladder removal, hysterectomy, breast pain joint pain , car sickness, thyroid issues, just all kinds of things going on complaining to anyone who could listen going to libraries searching medical information then the doctors, internet thank God for the internet, my mean doctor has been so hateful to me but l don’t have the strength or energy to go anywhere else and have stopped going to him lam just wanting to leave this earth ❤🙏waiting on God to take me
@florabraswell-nm1re4 ай бұрын
Prayers Sweetheart, l am also suffering from MCTD syndrome and eds Ehlers danlos a lot of mass cell allergies,sick with symptoms as a child growing up l have through the years always trying to explain to Doctors how l have felt , put up with gas lighting and all kinds of abuse had scoliosis hyper mobility gastrointestinal issues gallbladder removal, hysterectomy, breast pain joint pain , car sickness, thyroid issues, just all kinds of things going on complaining to anyone who could listen going to libraries searching medical information then the doctors, internet thank God for the internet, my mean doctor has been so hateful to me but l don’t have the strength or energy to go anywhere else and have stopped going to him lam just wanting to leave this earth ❤🙏waiting on God to take me
@kimberlina686 ай бұрын
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. 💔
@kimberlina686 ай бұрын
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. 💔
@kimberlina686 ай бұрын
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. 💔
@kimberlina686 ай бұрын
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. 💔
@kimberlina686 ай бұрын
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. 💔
@kimberlina686 ай бұрын
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. 💔
@kimberlina686 ай бұрын
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. 💔
@CharissaFrank6 ай бұрын
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.
@Anna-ww4pv6 ай бұрын
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.
@lillyrocks20116 ай бұрын
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
@lillyrocks20116 ай бұрын
@Desert35 Here is difficult. But thank you.
@lillyrocks20116 ай бұрын
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. 😢
@judithfuhmann75187 ай бұрын
Thank you for your excellent presentation.
@choc23able7 ай бұрын
Excellent extremely useful lecture for me as a rheumatologist. Thank you so much!
@4latchedmommas2 ай бұрын
😊😊😊😊😊😊😊
@Intwodeep9027 ай бұрын
also, is there any link to Epstein bar reactivation from the big C and lupus?
@Intwodeep9027 ай бұрын
Great video is there any link between drug-induced lupus with the prescription Effexor gabapentin and amoxicillin?
@shelleemepsy24097 ай бұрын
Removing my comment/question just proves the vaccine is the problem
@karolplouffe38077 ай бұрын
Could we get on with it????
@teekwatson16317 ай бұрын
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.
@anneseidensticker397 ай бұрын
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.
@gamaltaher97147 ай бұрын
Thanks
@evelynmartinez61367 ай бұрын
I struggle working more days out than working
@evelynmartinez61367 ай бұрын
Thank you this!! We need doctors retrained to believe and find how to help..i do fall under depression 😢
@ERNReCONNET7 ай бұрын
You are very welcome, here is the patient association in case you need: reconnet.ern-net.eu/patients-organisations-rp/
@evelynmartinez61367 ай бұрын
@@ERNReCONNET hello thank you for the resources however I am not in Europe (I wish I was!) I am in the USA
@evelynmartinez61367 ай бұрын
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.😢
@sinzero3118 ай бұрын
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 🙁
@suzannebrach28128 ай бұрын
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.
@minicraftslearnplay35096 ай бұрын
Hi how are you doing? I am new to this disease. My igg4 is super super high 😢 I am 35 yrs old women. I am very scared of this disease and looking for someone to talk about it 😔 🙏
@AimeeWeaver_18 ай бұрын
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!!
@eugeniebreida8 ай бұрын
Appreciating these videos! (From patient side)
@carlosromancastaneda11388 ай бұрын
Thank you very much for all the effort and continuous work you do for us!
@stoneman20238 ай бұрын
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