My husband was the first patient diagnosed at U of M hospital in 1980. It was made by a nephrology resident. It began with a growth on his eye. It was progressive. He was on large doses of steroids for 17 years. He passed in 1997 after heart complications in which pericardium became fibrous 2.5 inches thick, that presented like CHF, it required surgery, then sternum removed . He had gut complications, diabetes related to the steroids. He was on oxygen but continued to smoke. Before I retired as a nurse, I worked with neurologist who was also immunologist, we had a number of sarcoidosis patients. There was definitely a CNS connection. Many patients were young working adults who found it difficult to remain compliant with medication. Most were managed with low doses of steroids. Progression was very unpredictable.

Sending Hugs as big as Texas to the patients and caregivers who are dealing with this disease.

thank you guys for making this video

Hello I am 50 years old and I work a midnight shift at a hotel/restaurant delivering room service. I acquired sarcoidosis from accidentally inhaling an insecticide that is used by the Orkin Bug exterminator company. I did some research and they also gave me the chem sheets of the ingredients of the spray. The one main ingredient was a chemical made from a tree nut from another country. The side effects were that of breathing problems and to seek fresh air if inhaled. Just thought I would pass this info on to you for future research. Maybe some of the sarcoidosis sufferers like myself are allergic to this chemical used in hotels /restaurants by Orkin. Thank you

@tahliah6691

5 жыл бұрын

Thank you for sharing I looked up orin and found this active ingredient?! www.google.com/url?sa=t&source=web&rct=j&url=npic.orst.edu/factsheets/pyrethrins.html&ved=2ahUKEwiJjqf5lobhAhUCtHEKHdU3A88QFjAJegQIEBAi&usg=AOvVaw22rc0V1AYumcD1kKZuA_Ff extracted from chrysanthemum flowers...!!!!🤔

Very good video, They explain in details and in an easy way this disease. Thanks for doing this,, It really helps to several people to understand this disease.

Very informative. Helpful to those with this disease.

Thank you. This video has been very helpful. Dr Raj you are awesome

Praying for all of You.....For Speedy recovery 🙏🙏🙏🙏

I have sarcoidosis disease and it changed my life! I can't do things anymore

@elsagrace3893

5 жыл бұрын

Kimmer Jo me too. It’s life changing. I’ve always exercised and now I just have no tolerance. Even if I force myself I am so wrecked for the days after. I don’t get fit. There is no benefit. Before I got diagnosed I was pushing myself thinking I was tired because I was out of shape. I believe pushing it damaged my heart. I had an abnormal EKG, heart failure. It’s since cleared up. I live like an 80 year old now. I have to lie down all the time. I’m back on prednisone now. It helps after a month. I can walk a bit. I’m sure appreciating this. I get some of my life back for now.

@ericedmunds9488

4 жыл бұрын

I’m 35 and was diagnosed with cardiac and pulmonary sarcoidosis. I have Congestive heart failure and had a pacemaker/defibrillator installed. Been on tons of meds , steroids and immunosuppressants. It’s gotten worse over time and I’m on the transplant list. I can’t do much at all and hanging on by a thread. I hope I don’t die waiting for one it could take 2 years or more.

@keisharaye3304

4 жыл бұрын

I'm praying for all of us. Especially you, Eric,🙏🏿I claim Healing and restoration of your health.

@katherineroberts5698

3 жыл бұрын

@@elsagrace3893 ...My father was diagnosed in 2017. Now he is back at the hospital this week. He has kidney failure, blood pressure was really high, high liver enzymes etc. I been his caregiver since the beginning. I know you do not know me. However, sending hugs as big as Texas.

@saoirsehaslonglegs2313

3 жыл бұрын

I,ve not been diaagosed,but consultants are suspicious.i,ve been reading up on it,i have continuous chest pain,cough,heart palpatations & fast heartbeat,continuous migraine in the last month.exhausted all the time,joint pain,skin rashes,ACH on my hands,etc every soddin symptom..doesnt help we,re in a pandemic & its so hard to see a doctor.the more i read up,the more symptoms i have.God Bless everyone suffering,may God Heal & Protect You.Amen.

I loved this video I just got diagnosed 🤗 thank you for this information 🌷Stephie

@muhammadyasini6240

6 жыл бұрын

Stephanie Greisen

@chainmercado4376

6 жыл бұрын

My heart goes out to you..my wife have sarcoidosis and it hurts me that I can't help her with the pain she gets every time she has a fleair up.....all we can do is take it one day at it time ......some time I wonder why her and not me......to you I say is be strong and never give up fight for your life ....I wish you the best of luck and hope they would find a cure for this sick ness

@JayRoFrom

4 жыл бұрын

In the process of getting diagnosed. Suffering from fatigue and eye issues i.e conjunctivitis

Thanks

Thank you for info👌

I had severe symptoms for over 10 years & finally had to have open heart surgery because my dr ignored me. Granulomas caused me to have severe stenosis of the aortic valve .

I loved your video I have scardious in my lungs,airway mouth and limp nodes my father died with scardious by his lungs filled up and also his kidneys was real bad and had to be on dyalious and from what he has told me over several years that his dad's lungs was like mush and that's the way he died.so I guess it's my turn and this is very scary I just hope that they can help me,I've had it since 2013.i was 49 when I found out all the treatment I've been through isn't working and it's still spreading.so I wish the best for everyone and thank you again for the video

@elsagrace3893

5 жыл бұрын

john hoskin I have it very bad also. I seem to be becoming immune to prednisone slowly. I can’t to,erase methotrexate. So eventually I may need IVF immunosuppressive therapy or whatever that scary stuff is.

It’s all throughput my body. I’m in heart failure, lung scaring, & more. SO tired & fatigued. Have defibrillator & v tach.

@mervcran6895

3 жыл бұрын

My friends daughter has just been diagnosed with this dredfull disease... Are there any self groups available please

I don't know what you mean by that sir Sun think my daddy taught me up in the right way

I have found this video helpful. My doctors haven’t taken the time explaining the disease and I feel frustrated. I experience palpitations, chest tightness and shortness of breath. This has been spoken to the Respiratory Internist and my General Doctor. They don’t seem concerned and it make me feel more anxious. How else do I explain my condition

@elsagrace3893

5 жыл бұрын

S Friesen unfortunately this is normal with Doctors. They don’t acknowledge your symptoms and it makes you feel anxious like they don’t care and haven’t heard you. Probably they are listening but they have to observe your disease for a few years to see how it progresses. It’s the only way for them to learn how they should treat it. Just have patience, take care of yourself, keep yourself comfortable. Wait a few years and keep communicating with your doctor about your symptoms.

@colleendito2046

4 жыл бұрын

I asked for xanax to help with my severe anxiety and hyper-aggression (prednisone), I was made to feel like a drug addict, which made me more anxious when he said no. I wouldnt dream of asking for pain relief either. Total bullshit, wake up drs, nobody should be denied anything to relieve their patients.

can it produce masses in the neck,like on both sides

@Jkstolz

6 жыл бұрын

Gary Anderson That can be lymph nodes..

@elsagrace3893

5 жыл бұрын

Gary Anderson yes, I have that. It’s in my lymph nodes, spit glands and that other gland just behind and below the ear. It only goes away with prednisone.

i got diagnosed with sarcoidosis.. i want to know if anyone with sarcoidosis having joint pain?

It shows up like Lymphoma on the Pet Scan

Long term use is how long though? 4 months? 6? What if 8 months shows little improvement and within a few months of a different steroid being used after sarcoidosis the patient begins show signs of potential GI, liver, and heart involvements. As well as increasingly frequent episodes of staring blanking for a period of time ranging from 15 seconds to 15 minutes and have no memory of events earlier in the day of up to several hours long and even entire days. Could the drugs used to treat the sarcoidosis be the potential cause of this as well as hallucinations ranging from a star filled night sky inside of their bedroom when laying down to manifestations of loved ones who had passed away in recent years? I'm sure this video is likely rather dated and nobody will bother reading or replying, but if so, thank you for the consideration

@deesensation7460

4 жыл бұрын

J3GJ diagnosis’s came in 2015 For me The fight continues

I also having sarcoidosis form 3 years now i am 19years it cure are not for me

Hello sir... I am from India. I have sarcoidosis from last 4 months. I have cough and chest pain in left side. I meet my Dr. And exam my self and he told me. Now I use steroids I feel OK but I have joint pain. Now I start light exercise. Sir Main thing can I drink whisky two time in a week just 60-90 ml. Plz. Tell me sir it's request.... Thanks

@elsagrace3893

5 жыл бұрын

jassi chahal yes you can drink whiskey but any alcohol is hard on the body. Why do that?

Can a patient of sarcoidosis donate blood in life ever after recovery

@cheridehart8625

6 жыл бұрын

Yogita Sharma there is no recovery. Some even argue whether you ever even go into remission.

Dr.raj thank you very much for the interesting lessons on psycho doses on your history of learning on now known if it's transferable or not but I think it is transferable in some ways cuz some of the patients have here and I'll Place know some people winning open the same kind of looseness is they have listen to always learn in good ways and not doctor talks about section disease as this will also be Fuller on this on drunk and also being wise on the struggle some people just don't get it on the summaries are such as the symptoms are on this kind of a bacterial or so. What the hell is it you don't know how it is possible was coming from will Rufus valuable we don't know if it's coughing or even stress from where was just called was still learning from you. We're still obtaining the information we thank you very much for these lessons and volume up to the community and other people thank you Mr rog1 more time sincerely TCB Elvis the suite is man so you don't have to dress up like me. Imagine I'm all red rhinestones and everything on you while you doing an operation care and Amir 3000 every night we can go swimming for what's thank you very much

can sarcoidosis can affect your heart and what is the symptoms

@danielmercante736

6 жыл бұрын

MIGDALIA ROMAN yes is does and has. Please have your doctor check to see if it has gone to your heart.

@elsagrace3893

5 жыл бұрын

MIGDALIA ROMAN yes, and symptom could be anything.

Stay away from Gluten and fructose/sugar. You will feel better and go for walks.

Eureka 😻🙏❤️🤪💪

My dad was diagnosed with Sarcoidosis, at the moment he has trouble walking, he feels like his legs have no strength. Is currently in steroids I believe. Anyone have the same problem with their legs?

@truthsavant6005

4 жыл бұрын

Yes, I've been diagnosed about 1.5 years ago. I suffer significant pain in my legs. Walking down stairs or getting out of the car can be taxing. Unfortunately, I do not have daily support, there are times I have to cancel appointments or if I make it I'm unable to get to the office. So I drive back home.

@deesensation7460

4 жыл бұрын

Cristina Talley your legs your feet And also hands arms It’s a horrible disease we endure everyday

@azmeenakhan1762

3 жыл бұрын

yes i have the same problem.. joint pain in legs and arms

I just don't understand my pulmanoy doctor 😵.She still haven't explain anything to me 🤔.Just test after testing no answers 🙄.

@colleendito2046

4 жыл бұрын

Jtss BH Hvvb you should tell her. We lay people have to do our own research and be our own advocate. my dr said "you have Sarcoidosis" only bc my aunt had, I had heard of it. Otherwise, I wouldnt have had a clue.

Has anyone here tried eating papayas for curing Sarcoidosis? I've seen a lady who says she has had significant improvement by eating the fruit. Her KZread channel is GodWinsTV. God bless.

@elsagrace3893

5 жыл бұрын

Joshua Milor yes, and it doesn’t work. About 50% of people have Sarcoidosis that remits in a few years. So you will find a lot of people attributing their remittance to papayas or whatever. Moving out of a damp house. It’s not caused by any of that. None of that is the cure. There is no cure. There is only management or for the lucky people it just goes away.

I m from india and have sarcodoises from 10 years......after every year it come back n effect my both wrist....then after taking corticosteroid it goes like its not there ever...then again after one or 2 yeae it go......what to do sir i m jst 26yrs..plz help

@deesensation7460

4 жыл бұрын

Sana Adil sorry you’re going through this disease I too have knowingly been living with this disease for the past 5 years But from my research this disease seemed to have always been there just not active in my body I can send you some numbers of Doctors in NYC that may be able to offer you some help or at the least more information for you

Medical Marijuanna is the answer. Trust me, it has changed my life.....

@peggyrogers7012

4 жыл бұрын

It's not available to many of us. More doctore need to get behind this therapy for sarcoid patients.

@colleendito2046

4 жыл бұрын

what kind? I know nothing about medical marijuana. I have smoked pot in the past and have never liked it. But right now im willing to try it.

@anilsookhoo677

4 жыл бұрын

What you mean by medical marijuana? Is it the same as regular marijuana you buy in the street.

@Scrap3001

4 жыл бұрын

Anil Sookhoo No it’s not the same as in the street. Do some research and you will see it heals us Sarcs

@anilsookhoo677

4 жыл бұрын

Carnard Chapman I was diagnosed with sarcoidosis one week ago. You do you have a few minutes to talk on WhatsApp. 284-346-5114

I dont agree with about %'s or the amt if people that die from it. I'm on several sarcoidosis support groups. People are dying constantly. It's horrible. Hell, justbthis week we've lost five sarcoidosis suffers. IN ONE WEEK.

my friend has suffered from this problem. During this time, He was very Upset. Then Someone told him about Planet Ayurveda, he went there and took treatment. He realized the improvement in a few days. Now he is fine. So, if anyone is facing such kind of problem or any health-related problem. You should go to Planet Ayurveda.

@SUMANKUMAR-sm6lv

4 жыл бұрын

Sir I'm also suffering from this death full disease called sarcoidodis. My contact no 9304265906. Plz contact me and tell about better treatment.

@AmanpreetSingh-yp8bf

4 жыл бұрын

@@SUMANKUMAR-sm6lv I contacted Planet Ayurveda on their whats app no: (+91) 991-559-3604 they guided me properly

I’m gonna say it’s generic, something in the DNA. I’m the only one with sarcoid, most have RA, my boys have Raynods

WTF is this RAJ guy smiling about all the time...

@truthsavant6005

4 жыл бұрын

He's trying to be positive, unfortunately nothing he said helped anyone who has sarcoidosis and significant pain and suffering.

wtf. so its everywhere? head to toe?

@sharnespurr7806

5 жыл бұрын

Hi,every part of the body is taken over by sarcoidosis skin as well so it is a cruel illness that carries on giving. I have tried with the agreement of drs to stop meds but my condition got worse very quickly so had to go back on meds with higher doses and now having heart problems as well even more meds,it is a cruel unseen illness that people don't know about.

@deesensation7460

4 жыл бұрын

JayyBird it’s a terrible disease And it’s EVERYWHERE inside your body