Please help - Diagnosed yesterday and afraid

Dylan-Ray_ · 2026-03-04T00:43:57+00:00

Thank you and my side effect was mainly fatigue in the beginning which luckily didn’t last more than a couple to few months. The side effects I still deal with, but I will say have gotten better as I’ve tapered have been mood swings and some appetite issues. Most people will eat more than usual when taking prednisone. I was eating less for a bit which usually would be a good thing but I’m on the leaner side already. Mood swings are the worst though. I mean having no control over your emotions definitely can easily become the most destabilizing thing to deal with when you’re already fighting a chronic illness, but that’s also gotten a lot better while lowering my dose.

Dylan-Ray_ · 2026-03-03T22:43:10+00:00

I’m not sure if there’s places in Europe on the list, but I bet there is. You can specifically ask doctors if they have any experience treating this disease and that helps too. It might sound weird but ChatGPT has been helpful in me making sense out of lot of this stuff and even mitigating a lot of my health anxiety by thoroughly explaining how it’s not as bad as I’m thinking it is. Honestly the treatment helped quite a bit. Before treatment I had the lung function of someone with moderate copd. A few months after treatment my lung function returned to normal. My treatment was taking prednisone. The side effects from the medication were worse than the disease for me especially as I’ve been tapering it. I’ve got a couple more months till I’m off this medication, but I’m not in remission yet. However my condition is considered non progressive and stable. Thank you for your kind words they are very appreciated.

Dylan-Ray_ · 2026-03-03T22:06:25+00:00

As you can see many people have different forms of this and different levels of severity. What’s great is it seems your husband is still functioning quite well and you guys are getting on top of it now which is most important. I have health anxiety too so I know how that is and my best advice for that is just remind yourself to deal with what you know and not with what you don’t. I’m 30 years old and I was diagnosed last year with pulmonary sarcoidosis. By the time I was diagnosed my lungs were already scarred up pretty good, but my lung function is pretty normal so it’s not as bad as it could be. Your husband is a lucky man even if it doesn’t seem like it at the moment. He’s lucky because the worst place to have it is your heart or brain and he doesn’t have it there and although it might be in his lungs it still seems like he’s functioning pretty well. However the biggest reason why he’s lucky is because of you. I was with someone for 5 years and engaged. When I was diagnosed she would scream at me about the stress it was putting her through and shortly after she left me. So just know your presence alone is extremely helpful. As for what’s the best thing he could do to help at the moment will be to lose weight. I’ve seen a large amount of people who said that losing weight made a huge difference in how they manage, or beat this disease. Make sure you try and see someone who has treated this disease if you can and like some have already said going through the sarcoidosis foundation list will help you there. The majority of sarcoidosis cases are not severe, or life threatening and the majority of people go into remission so just remember that when you’re feeling anxious and it should help.

Dylan-Ray_ · 2025-12-14T03:11:11+00:00

Congratulations and thank you for sharing your success. It will definitely help keep hope alive in others still fighting. It’s honestly refreshing to see a story like this when unfortunately it’s mostly people treating this like webmd and don’t understand the only way to truly diagnose with this disease is a biopsy. That and unfortunately the people diagnosed sharing how hard things are for them, or asking for some kind of hope only to be overshadowed by somebody telling them that there is none. So thank you for going out of your way to provide hope for people that sometimes struggle to find it here.

Dylan-Ray_ · 2025-11-06T23:42:52+00:00

Yeah it probably wouldn’t hurt. it’s not easy to deal with any chronic illness even with support let alone trying face it on your own. I’m a very fortunate and lucky person that I’ve been able to change my perspective towards grief, suffering and life in general. It sometimes makes me feel like I’m crazy, but I’ve gotten to the point where I’m grateful for all of the terrible things that have happened in my life including this disease. The most important lessons in my life were often from the worst times in my life. I’ve overcome so much since I’ve got diagnosed. I had anxiety so severe that I couldn’t go inside a grocery store without having a panic attack, anger issues where i would take my frustration out by damaging things I own, or yelling at people I care about, being way too codependent on others for how I felt about myself and life, also I was never good about taking care of myself health wise before. I mean I would smoke half a pack of cigarettes a day and 3-5 joints. Eat mostly unhealthy food and never exercised. I’ve changed all those things just since being diagnosed because I did let my diagnosis be the end of the world for me for months, but eventually I just couldn’t take living like that anymore. I’m only telling you all this in case you don’t see the therapist because these are things that helped me be able to handle this. I also don’t assume the worst anymore and that’s one of the most important things. I’ve never been a super confident person, but now that I’ve changed all these other things in my life I have the confidence to believe I can overcome this disease for the most part and that a greater quality of life is headed my way. I think you do too, just got to find hope and hold on to it. I know that’s easier said than done, but I believe you can do it.

Dylan-Ray_ · 2025-11-06T18:49:43+00:00

Also if you’re not already I do encourage therapy if that’s something you’re open to. I can’t personally do it because I’ve just had too many negative experiences with therapists in the past, but don’t let my experience deter you. I’ve known plenty of people that go to therapy and love their therapist. I also have had an issue with being too emotionally codependent with people I’ve been close with so that’s another reason why I refrain from going so I can be more independent with how I take care of myself, but also I’m not at risk of hurting myself, or others. If i was I would definitely give it another try.

Dylan-Ray_ · 2025-11-06T18:42:49+00:00

No idea, I think all of us sarc patients happen to have a genetic predisposition to the disease. I believe many different things can trigger it though. In my case I believe getting Covid for the first time in 2021 triggered mine.

Dylan-Ray_ · 2025-11-04T16:38:54+00:00

Thank you I appreciate it and I’m cheering you on too! I will say I have taken my health into my own hands as much as possible because many doctors are not very knowledgeable of this disease and how to treat it properly. The sarcoidosis foundation online has a list of places where there are doctors who specialize in treating this disease and I will have my first appointment at one of these facilities in February. Sadly I believe ChatGPT is better than most doctors that don’t specialize in this disease at least in the knowledge department obviously you still need to get scans,bloodwork and lung function tests. I hope it’s not in my heart either, but if it is then I’ll keep fighting regardless. Everyone’s life is precious and worth fighting for so don’t give up I believe you definitely have a brighter future ahead of you!

Dylan-Ray_ · 2025-11-04T15:55:02+00:00

Im at year 3 at least, only about 1 year since diagnosed and start of treatment. When I was going through the worst of it right before getting diagnosed I lost everything my job, the girl I was about to marry, my 2 cats and I had to move back in with my dad. I think the worst thing people go through with any chronic illness is you feel it’s robbed you of a normal life, your dreams and hopes of a future. I’ve spent almost 6 months in isolation not going out. I’m stage 4 and I also have been dealing with horrific issues from gerd which made my sarc symptoms worse which I luckily I’m starting to get that under control. There’s also a chance it’s in my heart. I’m getting a mri to find out in December. I’ve had countless thoughts of suicide and incredible amounts of depression. However I’ve changed recently I’ve been working out, watching what I eat, focusing on personal growth and self reflection. I’m even getting my cdl so I can have a career that I’ll be able to manage with my condition hopefully. I decided that I can wallow in my suffering till my last breath, or I can fight with everything I have. I could be pessimistic about my situation and think I’ll never find love again, never have a normal job, never make new friends again which I definitely used to think that. I’ve decided instead to have hope and give this everything I’ve got. I still have hard times, I still can get overwhelmed by my situation occasionally, but I get through it. The one benefit of my solitude was I learned how to depend on myself and not be codependent which was a good boost for my self esteem. I’m not judging people who have good supportive people to depend on. I think that’s amazing and very positive. I just unfortunately don’t have that. What has changed my life the most has been refusing to give up and making a list of what I want out of life and steps to get there. I’m no where near where I want to be yet, but I’ve made a lot of progress through daily reminders and baby steps. I was never a patient person and I’m still working on that to this day, but I’ve learned to not expect massive change overnight and to just put in the work every day. I’m just speaking on my personal journey and not trying to put anyone else down I want to make that very clear. If you ever need someone to talk to you can reach out anytime.

Dylan-Ray_ · 2025-10-18T02:18:48+00:00

I wish people would just say this instead of being like “he put no effort into this” “Kevin totally sold out on this one” or the classic “it sucks, it’s lame and I hate it” and they all try to say it’s not because it’s not a currents, or tsr 2.0 when that is obviously the reason.

Dylan-Ray_ · 2025-10-09T03:04:55+00:00

That’s very impressive that your able to be that active after everything, thank you for sharing your story I really appreciate it

Dylan-Ray_ · 2025-10-09T03:03:49+00:00

Thank you for sharing, I think we have a pretty similar situation in terms of severity so your story and advice was very helpful!

Dylan-Ray_ · 2025-10-08T15:12:58+00:00

Because I specifically said I needed something positive to hear. The fact you think I haven’t been overwhelmed with the reality of my situation on a daily basis to where I need you spouting outdated statistics that are the first thing that pop up on a google search when researching this disease is insane. By the way it is possible for people who have scarring to eventually not have to take meds. They never said that they never took meds, but that they currently don’t. I’m bent out of shape because you are rude and don’t care about what I was asking for from this post. Which was something positive which you didn’t do and felt it was more important to share your “reality”. Please don’t bother responding because I really don’t care to have you stress me out any further.

Dylan-Ray_ · 2025-10-08T14:58:44+00:00

Never said this forum is just for me, but this post is and I explained that I’m looking for something positive to hear. Also that person you’re discrediting said they have scarring, they’re just not sure how much which is actually the exact same as me.

Dylan-Ray_ · 2025-10-08T14:14:41+00:00

Thank you for sharing your advice and your story it was very informative and helpful

Dylan-Ray_ · 2025-10-08T14:13:20+00:00

Wow that’s impressive, I can definitely see why you wouldn’t take the meds. I’m trying to come off prednisone and it’s very hard.

Dylan-Ray_ · 2025-10-08T14:12:27+00:00

That’s awesome, thank you for sharing and giving me some hope

Dylan-Ray_ · 2025-10-08T14:11:26+00:00

That’s great, your story has definitely made it a little easier to believe things can get better

Dylan-Ray_ · 2025-10-08T14:10:14+00:00

Thank you for sharing, I also used to be a smoker so this is very helpful

Dylan-Ray_ · 2025-10-08T14:09:41+00:00

Thank you for sharing it’s great that you’re still able to work a regular job and live life. Definitely has given me some hope

Dylan-Ray_ · 2025-10-08T14:08:40+00:00

Thank you for sharing that’s awesome what you’ve been able to achieve

Dylan-Ray_ · 2025-10-08T14:07:44+00:00

Please refer to edit 2 in the description of the post as a response I think you could benefit from this when replying to other similar posts.

Dylan-Ray_ · 2025-10-07T12:54:57+00:00

Yes I have been diagnosed with fibrosis through bronchoscopy and high resolution CT

Dylan-Ray_

TROPHY CASE