Sarc Stories (Short Documentary on Sarcoidosis)

Here is a video some fellow Sarkies and I made for other people with Sarcoidosis and thier familys. Hope all is well.

[@goat2503]

Was diagnosed with pulmonary Sarcoidosis in early 2012 after seeing swollen lymph nodes on a chest xray, I was sent in for a ct scan and a biopsy, I had a lot of strange symptoms leading up to diagnosis, thankfully I haven't had too many problems with it recently and I am hoping it stays that way. Just a comment of encouragement for those who are unsure or concerned.

[@jgeph2.4]

The Vegan Goat I just had a navigational bronch and they took some biopsy. I’m waiting for results but my doc seems to think it’s pulmonary sarcoidosis

[@patriciascrabeck8093]

I am sure you will have flareups over the years like I do. Right now I am in month 2 of my latest flare. Having really bad pain in chest, uvitis, and all over aches and pain. On 30 mg prednisone and my face is getting like a balloon b0ecause I am getting Cushinoid. My primary care is a real dud when it comes to treatment so finally got referral to pulmonologist and am hopeful I will get some help. Blessing to all my fellow sufferers ....we sure need it.

[@r.studio6170]

Just diagnosed lung sarcoidosis...a new in northern india..on prednisone 30mg....how are you now.

[@sherimonti9589]

I was diagnosed with systemic sarcoid about 3 years ago ,was a nurse working everyday I am now on disability,thank you for this video, your stories are mine,what a journey we are on with this disease I think sometimes this is the end but you know what it has been the beginning in so many ways for me ,all I ever did before was work now on days I can I have got to see a grandsons ball game or watch the neigh borhood kids in their Halloween costumes , the little things I never got to do ,I walked away from a 30 year friendship d/t the negative comments about lots of people have sarcoid and it's no big deal, even myself being a nurse never realized the effects of this disease we so need to stand together to bring awareness about this and again thank you for sharing it so helps to know you are not alone in this battle....

[@gangstar8003]

STAY STRONG.. I WAS DIAGNOSED IN 07 AND I WISH I CAN SAY IT GETS BETTER... SOME PEOPLE JUST DONT UNDRSTAND!!

[@davidk7544]

@@gangstar8003 There are definitely ways to make it LESS bad. We can share ways that help.

[@punkrockpopeye9040]

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

[@KarmaCowBoY47]

Thank you for this, I am a young man in my prime, getting worse every day, and I feel so alone with this illness. Thank you! Kristian, 26, Denmark

[@Parfeg]

Hey man, how are you doing now? any success?

[@patriciascrabeck8093]

So sorry you got this "bitch" disease in the prime of your life. Keep plugging away and don't give up. Justfgot out of a 2 day hospital stay for bleeding ulcer caused by steroids. Hope you find a good doc that can treat you. The Cleveland Clinic has a whole department dedicated to sarcoidosis so I might be heading there if I don't get better.

[@TrudyConway]

So glad to have seen the video. To know that other people understand this disease! I ignored the fatigue, coughing, and aches for a long time. I was diagnosed after being taken to the ER with "stroke-like" symptoms. I started with high doses of prednisone but had too many problems. Now I do weekly methotrexate injections and get Remicade infusions every 8 weeks. Still have a lot of fatigue and depression.

[@davidk7544]

I just spent the weekend in ICU from a "stroke like episode", my third. Depression is completely understandable.

[@victorynilsa]

This was a VERY informative video! It was great to hear different stories of people with the same devastating illness! I've had it since 12/2000. So much more info now!

[@walrusfest]

Stage 4 neurosarcoidosis here, with other affected areas include lungs, skin, kidneys, eyes, liver, central nervous system and colon. Life has been difficult since being diagnosed. Seeing a specialist in January. Hang in there all!!

[@davidk7544]

Dude, you hang in there too! Most of us are overweight, and we could all feel better. Try to get yourself into a new environment. It used to be when I was a kid it was NORMAL to dump our used motor oil in the back alley. It's entirely possible a particular house or apartment or block has nasty chemicals seeping out that can cause autoimmune disease, and the only way to stop this if it's happening to you, is to be in a different place.

[@dewsophine]

Thinking of you Thomas. I hope you’re having happy holidays and will have a very Merry Christmas 🎄

[@FreezelyGaming]

I'm glad I was able to learn more about Sarcoidosis. Being that my mom has this horrible illness. Hopefully in the near future all of the people who have suffered, will be able to get relief, and be able to live life. Thanks to the people in this video for sharing their stories, it has really been eye opening to know how my mom actually feels every single day. :D

[@butchsukanick5234]

I had sacodosis in lungs I was 114 lbs in hospital breathing bad would get sharp pains chest area bad my normal wait was 145 lbs I am 80 yrs old never had sacodosis back Will be going for MRI on heart make sure I have no sarcos there

[@davidk7544]

@@butchsukanick5234 If you do happen to have a flareup, you can remember you've been able to beat it back. Don't get down about it! Good to hear you are able to not suffer from it now.

[@davidholman3164]

I was recently diagnosed with sarcoidosis on 8/16/19 we have to keep fighting 💪💪💪

[@cheridehart8625]

I just had my biopsy, for Sarcoidosis, I have been sick for ten years, this video is great to hear stories of things I have been going through.

[@jgeph2.4]

Cheri De Hart How are you doing today?

[@milkywaydragon]

I'm 26 and facing a pulmonary sarcoidosis diagnosis. Thank you for sharing your stories.

[@byronsito5048]

Alchemical Dragon how you been doing, I also have pulmonary sarcoidosis

[@deadpoinsettia]

Glad to stumble on this...I was diagnosed a few years ago.

[@pennybaker1999]

The dr I saw said that it was in my head too, but I was a physc nurse and I told him that I had 30 years plus experience in mental health and it was not. He arranged a neck biopsy and a mri and I had neurosarcoid

[@davidk7544]

Yeah, it's all in our heads....

[@josephkerr6955]

I was diagnosed with venous thrombosis in the brain, blood clots, a CT Scan revealed Sarc in the lungs, am awaiting full diagnosis. A lot of brave people on here, the story of comparison with cancer rings true, people say to me, "if it was cancer they would tell you straight away, that's good news!" Right now from what I see, little difference to the sufferer with sarc to that of cancer, just no public suppport. I have never seen a charity, or coffee morning or private dedicated nurses for those with sarc.

[@daniellevictoria5105]

Hi there, I really enjoyed watching this informative video. I've been diagnosed with neruosarc and to say the least I"m pretty scared about what the future holds for me. Is there any way for me to get in touch with Mary Steel on this video who has neurosarc? Just to email her a few questions if she'd be open. Thanks again. Danielle

[@marydobney6040]

I suffer sarcodosis for 11 yrs it started in the lungs put on cancer meds ,prednisone etc Then it went to my brain I get full blown sarcodosis migraine alot it horrible. Then year letter I had another non cure called hypercalcima put on more meds ..I found out the predinson hurting my stomache I had to stop that but still stay on my meds.. Anyway I ended up being so tired alot when I clean my house it wears me out plus use to work full time now I can not. I forgot to tell you I am hard of hearing this non cure made my hearing go so bad it was hard on my family because I miss out alot. I pray for all of you whom have any kind of non cure God bless you.

[@CP-rr1hd]

Curious why when it is more common in African Americans and more lethal in them... You have none here??

[@randygordon8298]

I have Cardiac Sarcoidosis. I have sarcoid on my skin, a little on my face and in my lungs. The sarcoid in my heart has caused congestive heart failure. I also have Diabetes and COPD. I will see the electro physiologists in a few weeks to get an ICD. I can walk about two blocks. I pass out from the heart. I know it will kill me! I am just going to do my best

[@davidk7544]

Get away from where you are living. Something you're exposed to either at home, in your food, your air. Change it, clean it.

[@tonycostanzo383]

JESUS is on his way try not to worry , i go through difficulties from the sarcoid every day and every night , when JESUS comes you and all those who have given there lives to JESUS WILL HAVE NO MORE ILLNESSES . YOU WILL COME GOOD , THAT'S FOR SURE JESUS WILL NOT FORGET YOU , YOU BELONG TO THE LORD

[@aiman8127]

+TONY COSTANZO I\'m not sure but ,if anyone else trying to find out sarcoid cures try Wiltapar Sarcoid Cure Secrets ( search on google ) ? Ive heard some extraordinary things about it and my partner got amazing success with it.

[@tonycostanzo383]

THANKS i will check it out

[@manojsethi6657]

@@aiman8127 amen

[@funniful]

I have sarc. I can’t afford doctors. I don’t go. Lots of pain. ☹️

[@ginah.864]

funniful Please look into low cost clinics to help you. There’s always a way so please look into options to help you get the proper healthcare you deserve. Best to you! Stay hopeful and encouraged. 😊

[@JesusSaves3-16]

Diagnosed 1.5 years ago.. taking it day by day.. thanking God for every day I have..

[@BenjaminMarvel]

I have sarcoidosis. I take HEMP OIL, BLACK SEED OIL and RED CLOVER. I feel so much better.

[@bangelta]

you have no idea how lucky you are dealing with this in the USA , try having sarc on the NHS in the UK. they think i have health Anxiety , diagnosed with sarc in 2012 after a week in hospital. Having terrible symptoms now and its slow going in the UK

[@theturk191]

+bangelta Im in UK too. I take it you have been on Pred? Would be happy to help you anyway I can.

[@applepie3610]

In Australia, they think I had health anxiety too until they bothered looking at blood tests to find out my ACE levels are high

[@lindaellis9349]

Ask your doctor to refer you to the Sarcoidosis experts at the Royal Brompton Hospital, London.

[@Grobbies]

I was diagnosed with Sarcoidosis 2 weeks ago. It's in my entire liver, spleen and in part of my lungs. It's also in my lymph nodes and the nervous system is also affected as well as my skin. I had symptoms for about 4 years, and it got worse the past 2 years. It escalated the past 4 months and ended up in hospital, from the blood Tests the doctors finally decided to take a CT. It's not a common thing for the doctors here in South Africa to see it so severe and in almost all the organs. They are yet to do tests to see if it's in my heart. I do not know what to expect as it's in almost my entire body. Depression, fatigue, vomiting, disorientation, weight loss, night sweats, insomnia, swollen feet and ankles, headaches, chest pain that feels like a heart attack, shortness of breath and irritating dry cough, bloody nose but not bleeding, painful skin rashes, numbness and almost a needle and pins sensation in my legs, feet, hands and face gets so painful that I'm on chronic pain meds, my kidneys are also not functioning well anymore.... The diagnosis is Sarcoidosis but I do not know the specific Sarcoidosis yet. I'm very worried and would like to know if anyone else also got it so severe like I do. How will it affect my daily life in the future and must I be worried that it's going to be fatal in my case? I'm only starting with treatment tomorrow and it's on cortisone. I feel like a test subject as it seems like the severity of my condition is not very known here in SA.

[@williambambo2089]

Hope you are getting better, just had my biopsy here in Cape Town, waiting my results. I haven't had any serious symptoms however just a bit of shortness of breath and these weird rashes on my lower lip and beneath my eyelids. Bit nerve wrecking but we'll see what the results say.

[@sweetlady22wj]

Thank you all!

[@MsSydney61]

Thank you. Just misic is so loud

[@sillytubeify]

I was on 80-120 mg of preds for over 2 years, methotrexate, azothoaprine, plaquenel, and now, Humira. My teeth are breaking from the steroids and have herniated discs from spinal stenosis. Humira is a good option.

[@oscarpaz27]

I was just diagnosed. Thank you for sharing.

[@gr8ride411]

Check out the support group for Sarcoidosis on inspire.com they're a godsend! Diagnosed with pulmonary Sarcoidosis stage 4 and post-inflammory fibrosis in 2002. Today at age 66 and still under treatment and fighting every day. Praying for good days always🙏🏾

[@varvarailie4369]

To bad the beautiful piano at times is loud. Hey I’ve been there I’ve don it all and I am still waiting 😻

[@varvarailie4369]

For me the antibiotics did it 🌺❤️

[@davidk7544]

@@varvarailie4369 Go on? antibiotics did what? Did you have sarcoidosis? How long? What antibiotic did it?

[@camrontillery3093]

thanks for this went threw the exact same things so many it could be and nobody new until day six in the hospital and lymph biopsy

[@tonycostanzo3982]

Most doctors know jack shit

[@bipulbhattarai8216]

here's several things for solving sarcoidosis naturally Consider changing your Diet - In some cases sarcoidosis has been associated with celiac disease, such as a reaction to certain protein chains commonly referred to as glutens found in some cereal grains such as wheat. You could also try different Natural supplements, herbs, and vitamins Also the use of anti-oxidants and natural anti-inflammatory supplements could be of benefit. (I discovered these and why they work on Remission Crusher Tactic website )

[@ricardolesscar1309]

There are a few things for ways to treat sarcoidosis Consider changing your Diet - In some cases sarcoidosis has been associated with celiac disease, such as a reaction to certain protein chains commonly referred to as glutens found in cereal grains such as wheat. You could also take different Natural supplements, herbs, and vitamins Also the use of anti-oxidants and natural anti-inflammatory supplements could be of benefit. (I learned these and why they work on Remission Crusher Tactic site )

[@angelamalia2699]

There are several factors in treating sarcoidosis naturally. One resource I found which succeeds in merging these is the Remission Crusher Tactic (google it if you're interested) definately the most helpful guide i've seen. look at the incredible info .

[@chrisconner5439]

I would like an update on the people in this documentary. How is everyone doing today?

[@prdeepbora5214]

I have just been diagnosed with sarc of the lungs

[@ericedmunds9488]

I have cardiac and pulmonary sarcoidosis. Was 33 when I got it. It fried my heart they implanted a pacemaker and defibrillator. I’m 36 now and I have a 10% ejection fraction and I’m on the transplant list. It just came back and I’m on prednisone again. It is fucking hell!! Countless medications don’t seem to work.

[@Sarcoidfamily]

Thanks.

[@jazzsquall]

There is research that hypothesizes a relationship between mycobacterium (e.g. TB) and sarcoidosis (e.g. www.tuberculosisjournal.com/article/S1472-9792(15)30298-5/abstract). I suggest that you get checked for the presence of TB or similar mycobacterium in your system.

[@rhonda90402]

I don't think the audio or picture needs to be fixed...I was only going to watch half of it and come back and watch the rest and ended up watching the whole thing at once as it was so interesting and flowed so well.

[@randygordon8298]

Unfortunately, I am in a bad place. Only 5% of people with Sarcoidosis get it in their heart. It is fatal. Unfortunately over half of my heart is not functioning and I have arrhythmias in my heart.

[@kchilz32]

Randy Gordon I will pray for you. Im going to be put thru test for this sarcoid. The Lord is the only one that can cure us. Open your heart to him. Many blessings.

[@davidk7544]

It USED to be rare. Most of us are overweight which makes this much worse. Someone blamed your malady on being a "bored housewife"?!

[@lcassidy98]

Piano is annoying I can't hear the people talk......

[@potman8199]

God that piano is annoying. More annoying than my pulmonary sarcoidosis.

[@vid2ification]

God is certainly not who I thank. I thank science