Newly diagnosed. Terrified.
Posted , 5 users are following.
Hi all. First, please bear with me if my post is a little long. I know not everyone has the time or desire to read through long posts but I really hope at least some of you will be kind enough to write even a word or two.
I was diagnosed with this terrible illness 3 weeks ago after a biopsy (lung). The whole thing started 8 months ago (in July '16) when I woke up one day with this strange and terrible pain in my joints and could barely walk from the pain in my feet and ankles...Prior to this, had some swelling in my feet for a few days but wasn't accompanied by any pain but I really thought it was caused by some work I'd done (lots of squatting). 4 doctors and one hospital visit later and many blood tests for R. Arthritis that came back negative I was sent to a Rheumatologist. X rays, CT scan, then the biopsy, and it's....sarcoid. It took 3 months of waiting and worrying.
I am no stranger to suffering and have suffered (mostly mentally and emotionally but also some physical) just about every day of my life for the past 40 years but this was a whole new level. Being a worrier and suffering from severe anxiety and depression, these 3 months were nothing but hell. I was literally paralyzed with fear, spending hours and hours on the net reading on this illness. Doctor also thought it could be cancer at first. Stopped eating as appetite is always the first thing that goes when I'm worried. What makes things much worse for me is that I live alone and have no relatives around and only a friend or two who hardly call at all. So, I spend the whole day lying on my couch just worrying how bad my case is going to be. I don't work now and I don't go anywhere since it's almost always raining here (west coast of Canada). I just feel miserable and extremely depressed.
At the moment, my symptoms aren't bad at all. In fact, after the initial onset in July, the pain gradually went away in about 4 weeks but I only have occasional mild pain or burning sensation mostly around my right elbow and some mild pain in the left ankle and right above it that comes and goes. I did feel like the pain got a little worse in these areas after the confirmation of sarcoid, which I know is due to anxiety and stress since from what I've read can aggravate the condition. For the past few weeks and especially after my bronchoscopy, I feel some pain or discomfort in the middle of my chest after eating especially if it's something dry (it feels like some food is stuck in there) but it goes away after about 1 hr. That scares me and I'm wondering if it's because of the swollen nodes, or maybe because I've hardly been eating for these months. Another thing that scares me is eye floaters since I've read they can be caused by sarc but I've had mine for many many years but sometimes my mind makes me feel like they're worse and they can bother me. I also have some popping sounds in my shoulders and right elbow that started after this whole thing. Also some burning sensation in my sinuses/mouth but it seems to be most noticeable when my stress goes up. I don't have any shortness of breath that I notice (I used to bike). I do suffer from panic attacks and that can make my chest feel tight. I don't know about the results of my breathing test but according to the person who did it, it wasn't bad! I haven't talked to my doctor about it.
I've been waiting for some more tests on my heart (echo) and eyes for the past 2 weeks but I still havent heard from them. I'm just terrified that I might have it in my heart, eyes or god knows where else. I just can't stop this vicious cycle of worrying to death and surrendering to my worst thoughts. And here they won't give any meds for anxiety no matter what.
I know this is long but I don't know where else to turn. The loneliness and the fear are killing me, literally. I feel I'm wasting away slowly.
I'm sorry. I know my symptoms aren't bad compared to how bad others have it but knowing how unpredictable this curse (sarc) is, and to someone with severe anxiety it can be really bad.
Any help, suggestion is deeply appreciated. I can't find any local support groups.
Good luck to all of you and I pray to god that we will all be cured.
0 likes, 22 replies
Magghe Thesufferer
Posted
Im sorry I seemed to have missed it last time I read your comment. I get that feeling of "food stuck" at times. I asked about it because I thought it could be due to swollen nodes. Dr. assured me it wasn't. now I just try to ignore it and take smaller bites with water if I need to. That has helped a lot. I also have anxiety but haven't had a panic attack in close to 20 years thankfully. when I start to feel anxious I think about how much worse it could be. For instance I could have MS or cancer. it sort of helps to reassure myself. when I first get bad news I do tend to shut down for a day or two...but then I slowly start joking and making people see Im "ok" and my humor is probably innapropriate but I dont care because its about me (so Im not hurting someone else) and it me find some humor in it. I know none of this helps you I know how terrifying anxiety can be and I will think of you and hope that you get through each time with less and less. People could tell me the sky was blue ...but if I was in the middle of a panic attack I would be convinced it was purple....so I do actually understand a little. Im sorry they wont give you anything to help.
Thesufferer Magghe
Posted
Thank you so much Magghe for the nice words and the encouragement. I really appreciate that more than I can say. Yes I'm sure there are people who do care out there, unfortunately, there's none around me (in the real world).
I'm going to see my doctor tomorrow but I'm hoping to find another one - a good, caring one- soon but I know it won't be easy. I used to have a really nice doctor before this guy. She would sit and listen and not rush me. Not like most "doctors" who just look at you as a number and rush you. I'm going to need a lot of luck finding another one. But I'm glad you are happy with your doctors and you feel like they're doing the best for you. It seems like your eye doctor is one who really cares and is willing to take the time to diagnose, something many doctors aren't willing to do IMO. I saw 5 different doctors (one of them at the ER) about my pain and symptoms but only one decided to send me to see a rheumatologist, that one was my previous doctor. One of them even told me I had no medical issues and needed to look into sports medicine !! Just don't know how such people get to be doctors. I probably would've been screwed had my doctor -then- never refered me to a rheumatologist to try and get to the bottom of what was wrong with me.
Anxiety is something I've had for a very long time. When I first wake up I'm usually anxious and worried..for no reason. Well, that was before all this even started. So now.....multiply that by 1000. I used to struggle with panic attacks that I couldn't even drive in traffic or even go into stores like Walmart or Home Depot. Then I gradually got better until they almost disappeared until this started. I actually almost had a full blown attack right before I left the hospital after my biopsy. Luckily I was still next to the bed. Anxiety is like torture. I just can't stop thinking and worrying. What's going to happen to me and how's this illness is going to affect me and how am I going to manage on my own.....
Not knowing and the fear of the worst is what makes my anxiety get out of control. Heck, prior to my Xray and CT scan results I don't think I had much of symptoms but now that I know what I have and with all the anxiety some of my pains are coming back. Never even had pain in my chest or swallowing issues until they told me I had sarc.... Amazing how stress can affect us.
I'm like you in that when I first hear something bad it totally paralyzes me with fear then I gradually start getting better but this time seems to be the exception. Every time I think about this illness and how serious it can be it hits me like a wall and I fall deep into depression and anxiety. This is like a never ending nightmare. I just wish I were a little stronger than this but that's me.
I'm glad for you that you can make yourself feel better when anxiety hits you. I'm also glad that you can draw again but I really hope that they can do something for your eye. I really do.
Oh and this swallowing issue or the feeling of food stuck in the middle of my chest, I don't know but I feel it's connected to this damn sarc or the swollen nodes. Or maybe the anxiety just made it much worse or more noticeable. I'll ask the doctor tomorrow but thanks for letting me know. It kind of made me feel a little at ease that your doctor didn't think it was connected.
Again, just want to say thank you for writing again and for your care...oh and for your hug
I hope we all have better days coming to all of us.
Take care.
Magghe Thesufferer
Posted
I totally agree about the food stuck thing I am convinced it has to do with the sarc!...now hearing it from you and on other sites...I really think it is...somehow, someway. I am so sorry about the anxiety and stress....It seems like you were doing so fabulous and then this happened and stopped your great progress! Anxiety is so difficult to overcome and look what you did!! you'll get back there...just one step at a time, I truly believe if you did it once, you are strong enpough to do it again. Im sorry about your support system but we are all here for you...its ok that we are cyber support.
If there was more known about this disease it would be so much easier for people, especially people that are worriers. Its just so hard to find info on it and consistant info on it. very scary and frustrating. I am lucky to have a good support around me and other things I can focus on.
and yes my eye guy is great but when we did a look back at my february 2017 dx ... on my history dr, after dr, after dr. had completely missed what was up for 3+ years. I would probably still see if they had caught it when it was causing lung issues in 2014 (thankfully the lung part is not an issue now) its funny that an Eye dr. 3 years later thought to look at a disease that typically affects the lungs! In fact it was kind of fun to tell people that "no they still dont know why I went blind but now I am getting a lung biopsy" LOL I loved the look on their faces....it was like "huh?". It even took my eye guy from October 5, 2016 my 'day of darkness' to Jamuary 31, 2017 (MRI results showing Neuro Sarc) and February 1, 2017 day they proved sarcoid with biopsy to diagnose me...and from what I understand that is incredibly quick diagnosis....of course if we look back it was actually years. Does that mean I am considered "chronic"? does anyone know?
I know that in America if you present with pain they almost always dismiss you, at first blush, as "drug seeker". Americans are such druggies I guess we have jaded all our Dr.s. I guess that helped me in my diagnosis...they could always "prove" my complaint even back with the pleurisy I had when they thought I had Pneumonia in 2015 FIVE times (rarey sick, healthy, no meds, active....but I was a smoker)...but no one thought it was weird I didn't have a cough or temp??? then the eye issue the could "see" I blind...they saw the brain damage LOL (I hate that they call it that). Since I never had pain except the pleurisy I wasn't dismissed as quick and thats lucky but no one should be...pain is very very real and this disease has weird symptoms..how do they know, for instance, that the swallowing thing isn't related...they know so little about the disease. Ive heard that same description now from several people with sarcoid.
Does Canada (you are from Canada right?) or wherever you are from have a "sarcoid clinic"? where I am my state has Cleveland clinic and then a huge one in Cincinnati...does that mean we have a lot of it here? I worry about my sons a lot! I hope they arent at risk.
I hope this finds you better. I hope your visit is really good one today...Push for something for the anxiety...thats so much stress for nothing! You need help with that and they should help you.
Thesufferer Magghe
Posted
Thank you again Magghe for being kind enough to write again. It's much appreciated.
I think deep down I knew the feeling of food getting stuck is somehow connected to this damn sarc but I was hoping it was all psychological, or maybe in my case was caused by the fact I've been going days at a time with hardly eating anything (this problem with swallowing didn't exist prior to all this). You kind of made me feel more at ease after you told me your doctor didn't thiink it was connected. But now....well, I'm scared again. The funny thing is my doctor -during today's visit- wasn't concerned about this and didn't think it was connected either. But I don't take everything doctors say for granted, especially now that I see most doctors don't seem to know much about sarc.
Yes. Anxiety has caused me a lot of problems. Now, it's making things a million times worse with this damn illness. Indeed, prior to having the diagnosis I was feeling 99% normal. After the initial onset, things just kept getting better and better and I kind of put this whole thing behind me -even though I was still wondering what could've caused my pains and symptoms. But once they told me (back in Dec) my lymph nodes were swollen I started having new symptoms. In fact, I started coughing on the same day I was told about my Xray !! and felt like my chest was on fire and like it was being compressed.... That's when I also started having pain in my chest. Strangely, the cough completely disappeared in about a day once my doctor told me it's not likely I have cancer or lymphoma according to the blood work. However like I mentioned, once I got the sarc diagnonsis this past March, I started having some pain again within 3 days. Luckily, it's nothing compared to the original pain but I'm worried with my stress and anxiety levels being so high I might be inducing another flare up. So, I know I was able to get better the first time due to the fact that I had no idea I had this illness. Now, I think it's going to be a whole lot harder knowing what I know now. But maybe with time and maybe if at least I find that my case isn't a multi system involvement.
I'm very sorry that the lack of experience on the part of your doctors was -or IMO it was- the cause of you losing sight in your eye. This sucks and it makes me mad. I don't expect doctors to know everything about everything but I just believe that most doctors are NOT doing all they can to help their patients. Most doctors can't or refuse to think outside the box a little. Unfortunately, patients are the ones who end up losing. I used to watch "Mystery Diagnosis" and it would always shock me how incompetent and unskilled many doctors are, and how quick they are to dismiss you or wrongly diagnose you. It's sad and maddening.
I still hope that by some miracle you gain some of the sight back in that eye.
Yeah I'm in canada (the west coast, or as they call it here, the wet coast, same rainy weather as in Seattle). I don't think there's a sarc clinic here. I probably would've been refered to one had there been one.
Today my doctor was a little nicer but I don't think he knows much about this illness or what tests we need to do. I've given up on anxiety meds here. I don't think it will ever happen. I might just start going to the ER every other day or when I can barely move due to lack of eating. They're slowly killing me by leaving me suffer like this.
You asked if your case might be "chronic" since it's probably been 3 years... I just hope it isn't. You've probably read that most people have the illness for years before it gets better and possibly even go away. I'm not the most positive or optimistic person but just want say try to hold on to that hope.
Thanks again for writing and for your suppot. I hope you and every one else in here have a nice evening and weekend...somehow.
Magghe Thesufferer
Posted