was diagnose with lymphatic hyper eosynofylic syndrome but i constanly feel i have sinusitis, the contitions are very similar with almost the same symptoms
im a medical student & got patient with EGPA admitted for colonoscopy today. He got adult onset asthama for 5-6 years, having severe abd pain following meal last for 30min, lost of weight ,lost of appetite, diarrhea, paresthesia & burning sensation of leg . This video help me to learn more about the disease.
I was diagnose with lymphatic hyper eosynofylic syndrome but i constanly feel i have sinusitis, the contitions are very similar with almost the same symptoms
My brother was diagnosed with this in May and we lost him last month, but he went thru a number of issues and it caused inflammation in his brain, caused heart issues and also GE issues thst led to his pressure to drop and resfused to come up and we sadly lost him... I find myself still making endless research on this and wonder what the doctors missed😢
My mom has this. Thank you for the very informative video. She's gone through chemo she's taking lots of different pills. She's 60 and has had this for 2 years and nothing is working
I was diagnosed with asthma, eosinophilic pneumonia and the possibility of Churg Strauss Syndrome 17 years ago. I’ve been on prednisone for 23 years. I’m on Dupixent now, methotrexate, prednisone and inhalers. It has now affected my right eye (hemorrhaging) pain in my head unbearable. My hair hurts when the wind blows it or the shower water hits my head. I’m looking into seeing Dr Robert Morse in Port Charlotte, FL, he’s a Natropath Doctor.
My daughter has EGPA, she is suffering and has been on many medicines. She has been on Prednisone for over 5 years, nothing is working anymore. She is 31 years old, I am desperate, I need help for my daughter. We live in Maryland, can you recommend any treatments?
I am 25 and just got diagnosed with EGPA. They are going to put me on a monoclonal anitbody called Nucala. The Doc said if they could get me the therapy right away they wouldn't have had to put me on the Prednisone at all.
I have EGPA, nothing is working either. I understand her pain, it's a very hard life. Everyday is pain and suffering. So hard as there isn't a real fix. Especially in the later stages where I am. I've been through all types of pills and most recently finished my 6 month chemo therapy treatment. Right now I've taken things into my own hands and research, I can't rely on doctors to take care if me especially if nothing is working. So I'm testing different diets and fasting to see if that works, so far I'm feeling better than before but not by much. I wish you especially your daughter the best.
@@gravellergear4703 MY daughter tried Nucala, she couldn't get out of bed for two weeks. She couldn't function. She is trying CBD Oil, organic diet, and edibles. She seems to be doing okay so far. I'll keep you posted on her progress.
@@tamarshealy6699 thank you so much. I'll keep posted on my progress too. Right now I'm doing alternate day fasting and relying on something called autophagy that happens when fasting for long periods. I'm now gluten free and have dropped my meds except inhalers. I wouldn't recommend it but I feel way better than before. Maybe it's my mind? I'm exercising and fighting through the pain, have lost 30kgs and seeing abs which is a plus haha. But yes will keep you posted.
I saw my PCP three months ago with peripheral neuropathy in both hands and right foot, headaches, joint and muscle pain. she did a set of labs and we scheduled a f/u visit 3 weeks later. she told me my labs were fine and I asked her if I should f/u with a neurologist bc of the neuropathy and headaches. She said sounds good. I made the first available appt with neuro for November. Now my symptoms are getting worse, I'm also having bladder issues, shortness of breath, swelling in my hands, feet and face as well as numbness in my face and around my ears and teary, itchy eyes.. Recently, when I accessed my online chart, I saw my labs from June and my eosinophils were 566. Should I be evaluated for this syndrome? I called my PCP's office and they can't get me in until the end of October. I am so worried. I don't want further damage to happen while waiting to be evaluated and treated. Should I go to the ER?
I accidentally came across something & the more I'm learning about it I'm panicking because everything seems to fit. Thankfully my eosinophils are about half of what's considered hypereosinophia but they've been high for years. Anyone on here have this?
I have this and one of the telltale signs is your nose is extremely damaged! My septum has holes in it, it looks like ground beef, and so much more issues and I was VERY VERY SICK to the point I was slowly dying My oxygen was in the mid to high 80’s and no meds were working and all the ones that did slowly were stopping It’s very rare so you need to see a specialist to get a diagnoses and mine told me there is a form of asthma that most people have but they may think they have EGPA but in reality they don’t Honestly without the treatment I would be dead and in my experience you are so fucking sick you really can’t miss it so if you are worried get a dr but remember you may not have this and actually have a form of asthma that can cause something to show in bloodwork (I don’t know as much about that asthma as I do about EGPA since I stopped looking into it after I learned I don’t have it) I’m 22 and I started getting symptoms a few years ago and I have like every single thing on this video and I’ve honestly lived in the hospital and dr offices and I am still very very sick and I’ll never be normal but thankfully with medical advancements the lifespan of people with EGPA is much longer! But before I started the shots used for EGPA I was so so sick that I was actually dying and my drs told me that without the shots (which are $4,000 EACH... thank god in Canada my gov pays for it) I would have been lucky to live to 23 or 24 AT MOST
my cbc eosinophils 17.1% normal is 1-6%, absolute eosinophils count 1170 cells/cumm normal 40-440 cells/cumm i had rashes, it resolve by prednisone for a month but after lt came back again 😢😢😢
I diagnosed a patient with this condition today and found this TH-cam video which summered up my patient well
was diagnose with lymphatic hyper eosynofylic syndrome but i constanly feel i have sinusitis, the contitions are very similar with almost the same symptoms
im a medical student & got patient with EGPA admitted for colonoscopy today. He got adult onset asthama for 5-6 years, having severe abd pain following meal last for 30min, lost of weight ,lost of appetite, diarrhea, paresthesia & burning sensation of leg .
This video help me to learn more about the disease.
I was diagnose with lymphatic hyper eosynofylic syndrome but i constanly feel i have sinusitis, the contitions are very similar with almost the same symptoms
This is the best medical channel imo
I practically have listened to most of them
Thank you for sharing this. I have just been diagnosed with EGPA. Took 2 years to diagnose but finally on the right path now
@@francotomas1101 it’s very rare and most doctors don’t know to look for it
Nasılsınız hanımefendi nasıl gidiyor tedavi
My brother was diagnosed with this in May and we lost him last month, but he went thru a number of issues and it caused inflammation in his brain, caused heart issues and also GE issues thst led to his pressure to drop and resfused to come up and we sadly lost him... I find myself still making endless research on this and wonder what the doctors missed😢
My mom has this. Thank you for the very informative video. She's gone through chemo she's taking lots of different pills. She's 60 and has had this for 2 years and nothing is working
Wish her the best.
I read a lot about this disease and I found that oxygen hyperbaric therapy works but always consult your doctor first.
some studies suggest the use of IL-5 inhibitors like Mepolizumab
@@HaVoCX64 Nucala
I’ve had this since 2014 and am on Rituxan infusion every four months. It has helped me.
Great job!! Amazing presentation.
Thank you so much! :)
I was diagnosed with asthma, eosinophilic pneumonia and the possibility of Churg Strauss Syndrome 17 years ago. I’ve been on prednisone for 23 years. I’m on Dupixent now, methotrexate, prednisone and inhalers. It has now affected my right eye (hemorrhaging) pain in my head unbearable. My hair hurts when the wind blows it or the shower water hits my head.
I’m looking into seeing Dr Robert Morse in Port Charlotte, FL, he’s a Natropath Doctor.
Have you seen him yet? Curious if he was able to help
You or what he suggested. I have followed him for a long time.
Do you happen to have any root canals??
Get to Vanderbilt University Hospital in Nashville Tn. They are on top of this and know how to diagnose and treat
My daughter has EGPA, she is suffering and has been on many medicines. She has been on Prednisone for over 5 years, nothing is working anymore. She is 31 years old, I am desperate, I need help for my daughter. We live in Maryland, can you recommend any treatments?
I am 25 and just got diagnosed with EGPA. They are going to put me on a monoclonal anitbody called Nucala. The Doc said if they could get me the therapy right away they wouldn't have had to put me on the Prednisone at all.
@@Izarktrail , please let me know how it goes and if it works. My daughter is going to try the CBD oil with the THC and see if that helps.
I have EGPA, nothing is working either. I understand her pain, it's a very hard life. Everyday is pain and suffering. So hard as there isn't a real fix. Especially in the later stages where I am. I've been through all types of pills and most recently finished my 6 month chemo therapy treatment. Right now I've taken things into my own hands and research, I can't rely on doctors to take care if me especially if nothing is working. So I'm testing different diets and fasting to see if that works, so far I'm feeling better than before but not by much. I wish you especially your daughter the best.
@@gravellergear4703 MY daughter tried Nucala, she couldn't get out of bed for two weeks. She couldn't function. She is trying CBD Oil, organic diet, and edibles. She seems to be doing okay so far. I'll keep you posted on her progress.
@@tamarshealy6699 thank you so much. I'll keep posted on my progress too.
Right now I'm doing alternate day fasting and relying on something called autophagy that happens when fasting for long periods.
I'm now gluten free and have dropped my meds except inhalers. I wouldn't recommend it but I feel way better than before. Maybe it's my mind?
I'm exercising and fighting through the pain, have lost 30kgs and seeing abs which is a plus haha.
But yes will keep you posted.
very informative! thank a lot.
You're very welcome! And thanks for the comment :)
@@jjmedicine I had these disease what to do
Thanks
you are worthy of more than like and subscribe for your way in explanation of these topics
Wow halfway through and I suddenly realized this is not a veterinarian channel talking about cats oh my God !
I saw my PCP three months ago with peripheral neuropathy in both hands and right foot, headaches, joint and muscle pain. she did a set of labs and we scheduled a f/u visit 3 weeks later. she told me my labs were fine and I asked her if I should f/u with a neurologist bc of the neuropathy and headaches. She said sounds good. I made the first available appt with neuro for November. Now my symptoms are getting worse, I'm also having bladder issues, shortness of breath, swelling in my hands, feet and face as well as numbness in my face and around my ears and teary, itchy eyes.. Recently, when I accessed my online chart, I saw my labs from June and my eosinophils were 566. Should I be evaluated for this syndrome? I called my PCP's office and they can't get me in until the end of October. I am so worried. I don't want further damage to happen while waiting to be evaluated and treated. Should I go to the ER?
I hope you got your b12 checked and figured out what was wrong !
Great!
i have wegeners with asthma, pneumonia, and achalasia.
I accidentally came across something & the more I'm learning about it I'm panicking because everything seems to fit. Thankfully my eosinophils are about half of what's considered hypereosinophia but they've been high for years. Anyone on here have this?
I have this and one of the telltale signs is your nose is extremely damaged! My septum has holes in it, it looks like ground beef, and so much more issues and I was VERY VERY SICK to the point I was slowly dying
My oxygen was in the mid to high 80’s and no meds were working and all the ones that did slowly were stopping
It’s very rare so you need to see a specialist to get a diagnoses and mine told me there is a form of asthma that most people have but they may think they have EGPA but in reality they don’t
Honestly without the treatment I would be dead and in my experience you are so fucking sick you really can’t miss it so if you are worried get a dr but remember you may not have this and actually have a form of asthma that can cause something to show in bloodwork (I don’t know as much about that asthma as I do about EGPA since I stopped looking into it after I learned I don’t have it)
I’m 22 and I started getting symptoms a few years ago and I have like every single thing on this video and I’ve honestly lived in the hospital and dr offices and I am still very very sick and I’ll never be normal but thankfully with medical advancements the lifespan of people with EGPA is much longer! But before I started the shots used for EGPA I was so so sick that I was actually dying and my drs told me that without the shots (which are $4,000 EACH... thank god in Canada my gov pays for it) I would have been lucky to live to 23 or 24 AT MOST
my cbc eosinophils 17.1% normal is 1-6%, absolute eosinophils count 1170 cells/cumm normal 40-440 cells/cumm i had rashes, it resolve by prednisone for a month but after lt came back again 😢😢😢
Is it true that majority are ANCA positive. I though research I’ve seen says only 30-50%-ish of ppl are positive
How can steroids increase the risk of EGPA when it's the treatment for it?
Nasıl yani bunu anlamadım. Steroid zaten egpa yi tedavi etmiyor mu
مع الأسف لا أفهم الإنجليزية وأعاني من مرض شيرج ستراوس😣.تم تشخيصها مؤخرا.
Nasılsın bende de o hastalık var ve çok üzgünüm
Hi @@hacerhacer724
My wife has had EGPA for five years. It's ruined her life.
Description should be given in Assamese language,sir.
She told the rheumatologist not to treat me smh
napa search ako ito pala sakit ni Kris Aquino
Same here...😎😎
How cruel
High dose steroids and cytoxan.
Great job!! Amazing presentation.