Newly suspected..
Posted , 6 users are following.
Hello everyone,
I was just told yesterday I may have sarcoidosis. I was and am still in complete shock. I have been having trouble with my eyes since last summer. Blurry, tons of floaters,flashes of light, then developed a black spot just to the left of my vision in my left eye, dizzy spells, developed a roaring in my right ear and lost partial hearing. All of these things happened within days of each other. My hearing and black spot in vision resolved but floaters and flashes remain. I then started having chest pains over christmas. Very sharp pain on left side of chest, hurt worse if I moved or breathed deeply. It would usually last 30 seconds then go away, I then had an episode that lasted 30ish min and was quite scary. Chest xray revealed nodules in my lungs. My doctor mentioned sarcoidosis. I also have the red bumps on my legs and now that I have read some about it and with all my symptoms I am quite scared I have a severe form, or maybe severe flare up. I am being scheduled a CT chest, bronchoscopy, lung biopsy and being sent to a pulmonologist. I am quite scared of the test and the outcome. Any advice will be appreciated! I am in Canada.
0 likes, 11 replies
cris_b amanda41656
Edited
Amanda, Sorry to hear your going through this. Its always good to wait after the biopsy results. I have most of issues you mentioned. i have been dealing with it for 10 years now. Just within the last year i started with floaters in the eye. I see a specialist at first every four months but it hasn't progressed. There are treatments that can help. I hate to say this but stress can REALLY send your symptoms into overdrive. If they tell you it is sarcoid I can pass on advice that other patients shared with me that really helps. Take care Cris
david96615 amanda41656
Edited
hi amanda i know what you mean i too have had it for a number of years . mine is currently in remission after 18 months of infusions with Infliximab i get my check up in march . i have it in my lungs lymph nodes heart and liver take care
Helen219 amanda41656
Posted
HI Amanda, it does seem scary at first but you will cope better than you think. Deal with your symptoms on a day by day basis. I have multiple issues, good and bad weeks or months and I was diagnosed 21 years ago. Don't let fear take over and be as active as you can within your ability. Keep us informed on your progress, Best wishes Helen in Scotland
amanda41656
Posted
Thank you all for being so kind. I will keep you all posted.. I hope you all are well. I am still waiting for all those appointments to be scheduled.
amanda41656
Posted
I had a severe painful chest episode tonight. My fiance and I were coming back from Valentines dinner and my chest felt heavy, I felt like i really had to work to expand my lungs to get a good breath in. The heavyness lasted about 5-10 minutes. Then the sharp pains set in, we got home and I had to lie on my stomach and my fiance rubbed my back as the pain seemed to radiate through my chest and around to my shoulder blades and go down my right arm. My stomach also seemed to hurt but honestly at times I didn't know what was hurting-my stomach or chest! The pain just went all around.. It lasted about 20 minutes and then seemed to suddenly go away except a bit of pain around my right shoulder blade. I still am getting a dull ache in my chest that seems to come and go.. but not the heavy or sharp. I thought maybe I should go to Emergency. When is there an emergency with this disease? Or do you just tough it out until it passes?
Helen219 amanda41656
Posted
HI Amanda, I know Sarcoid causes pin in our chest but wondered if you have been checked for gallstones. This frequently causes pain as you described especially after a meal. B est wishes Helen
barb30898 amanda41656
Posted
Hi Amanda,
Sorry you are dealing with this adversity.
we would all wish no one to have to go through this period of fear of the unknown , and feeling out of control.
You were so smart to locate this site. There are so many people, in similar situations, who are willing and able to give you guidance, and advice, taken from their research and experience
You will feel better, when you have gone through the tests, and seen the pulmonologist, because, then you willhave a plan, and with that, comes more control, rather than helplessness, and fear.
(write down all your questions to ask, along the way.
In the meantime, listen to Chris_b, Stress is your enemy.Do and think things that put you in a better place.
Meditation, is so very good at putting your mind in a much calmer place. ((As soon as I finish message, i am going to do the same thing. I'm glad i mentioned it.)
I am going through the same process, as you, and I am just realizing that Major Stress, over an extended ) period, has caused a most negative effect. Too bad, I couldn't go back and change that.
I have Sarcoidosis, which has not required treatment, in the 7 or 8 years, since I went through the same tests, as you.
i am a bit mo re complex, in that I was diagnosed in1996, with Lymphoma, breast cancer, in 2002. In 2011, I was told that I needed treatment for lymphoma, and given chemotherapy. I'm quite sure it was Sarcoidosis, which the doctors didn,t recognize, and after that came a series of autoimmune problems, PMR, Sarcoid diagnosis, hypothyroidism, hypogammaglobulinemia (which means i don,t have enough antibodies to fight off infections, so i must have immunoglobin replacement.
i have a number of symptoms, assumably from sarcoid, which might react with a component in the immunoglobin replacement, so i'm holding back on that, and I don't have an answer.
Too much info
i think i will meditate now!
Wishing you the best and thinking good thoughts!
Barb
paul73780 amanda41656
Posted
Hi,Amanda how are you now.?Going from my experiance it could be worth going to get your eyes tested,because for me from that i was admitted to hospital.Odd things started happening to me this week twelve years ago,didnt get to that point until the end of July.Hopefully you will get a diagnosis soon and then you can move on.Ever since i have been monitered and bloods tested every 6 months and have remained stable,so you be able to move forward & get on with your life.
amanda41656 paul73780
Posted
Hi, I am doing ok. I did have an eye appointment with a specialists and he said the gel in my eye was very inflamed. He wants to wait until after my lung biopsy before he decided if and how to treat my eyes. I have a CT chest Tuesday. So, still going through the diagnosis motions. I haven't had any more of the super painful chest pains, just more discomfort in my chest, only thing new is now my left armpit gets quite painful sometimes. Like a toothache. Hope you are well.
paul73780 amanda41656
Posted
Just to add to my comment on getting your eye's tested,they found i had a bleed at the back of 1 eye so then i was seen at the eye Hospital.They spotted something and i was admitted straight away,loads of tests followed and after about 10 days we had a diagnosis
amanda41656 paul73780
Posted
They did a pretty thorough check, ran dye through my veins and did scans of my retina, veins, and eye structures. He said my actual eye is healthy, just inflammation to the gel part of my eye. He doesn't want to treat though until they actually diagnose me. So, having to wait for the lung biopsies for definitive diagnosis. I am trying to not worry too much about the biopsies but I am pretty nervous.