Sarcoidosis - not enough care and attention given to sufferers

I was diagnosed with stage 1 sarcoidosis last week by respiritory consultant. I had been seeing his registrar for a year with no diagnosis. i saw the consultant for the 1st time and got a diagnosis. He said I dont need treatment and to stay fit as if i lose my fitness i wont be able to get it back. The only thing my bloods show is that i have low immunoglobulin and anemai. Chest x rays and ct scans where normal, although it said I have a bulky pancreas, but looked normal (not sure if this sarc related) He has referred me to a cardiologist to rule out angina as i sometimes get dull or sharp chest pain and feel sweaty sometimes. My main symptoms are breathlessness, dry cough, runny nose, excess plegm back of throat, rash on knees, arthritis shoulders and knees. dry eyes, uveitis, severe anaemia (levels dropped from 16 in april to 10.8 now. and mild glaucoma. I also have osteoporosis, underactive thyroid, bi polar, raised cholesterol, mild chronic renal failure. I realise that i have to be my own expert with this illness. i do have a good GP who if i go to see her and say i think i may have this, can i have a blood test to check, she says yes. i used to be a nurse and dont have a problem asking for what i need. I have a question about vit D and sunlight. I found out i shouldnt be taking calcium and vit d which i have taken for 10 years for osteoporosis. I asked bone nurse who asked my rheumatologist who said stop taking it. That was yesterday, so if i hadnt done my own reasearch, i would still be taking it. I go for a an hour long walk daily, and i am  black woman, so should i be using sun screen as i think we absorb more vit d from sun(not sure about this) I know some sites say you shouldnt go out in sunlight with sarc, but i get depressed if i dont go out and dont want to give it up. My consultant wants me to have another lung function test, my last one was last december, he wants to see me in 4 months and wants to follow me up for 5 years. 2 days after he diagnosed me i saw a haematologist as GP wanted to exclude lymphoma. She said you dont have sarcoidosis. When i said i had been diagnosed 2 days before, she said she doesnt have access to my lung function tests as i chose to go to a diffrent hospital to get a 2nd opinion. She referred me to the multi disciplinary team, but didnt say why and said she doesnt need to see me again. It feels good to have a diagnosis, but confusing as there is so much to learn about it and i realise its only by being on sites like this that i am going to learn. sorry for the long post but it feels great to get it all out. Thank you for listening x

Hi..My name is Janice. I am very sick. I don't know for sure what's wrong with me but I been researching sarcoids since 2008. It bothered me to read your post due to your statement that it's not a deadly disease. My younger sister died in 2009 from exactly sarcoidosis of the lungs. She was 31 with two boys left behind and a lot of unanswered questions. She took her last breath in front of me. My mother died in 2013 from what I thought was a heArt attack in front of me. Her death cert says respiratory failure. During my research, I have since found pictures and documentation that leads me to believe, she too had this disease. I now am getting sicker and sicker and through my research, have found Information that leads me to believe I may suffer from sarcoidosis of the brain. I'm desperately trying to document and find all the evidence I can to prove not only my sister but yet my mom and I too suffered with this and that it is not only deadly but also hereditary. Any added info or things you feel would help or be beneficial to me would be much appreciated. I lose more and more memory in the pAst six months and have black out spells lasting up to three days now. I feel i won't have much more time to truly find out or prove anything I have seen within my own family and life about sarcoids before too long.

Hi

I live in Ireland and agree that there is not enough support for sufferers, I go to my 3-5 month scheduled appointments and sit and have a chat about how I am, how I feel, how I'm coping with the dose of steroids. 5 weeks ago I went and at this stage I had been weaning off them and got down to 3 mg a day from 35 mg a day however I was being weaned off with out the doc seeing me and up until 5 weeks ago it was 5 months before that.

I explained I had being suffering from very bad headaches for at least 3 weeks everyday, he said for me to go back up to 8 mg a day and see how it goes for 4 weeks that the low dose of steroids could be causing them. If they continue the same or get worse I will have to go for an mri, I was told sarcoid is rare on the brain but it will have to be checked, he also said that because of the quick weaning off they could of stopped working and made the sarcoid worse again.

So I rang them 10 days ago and was told that there is a long waiting list for mri and I would have to wait. What can I do? I have to wait, in the meantime I think I now have a chest/ lung infection.

Haha its never ending, private is too much money but at this stage I think I will pay whatever because I cannot wait anymore.

Don't get me wrong my specialist is very good (when i get to see him) but how much more can my body take.

Hi Alisa,

I am sorry to hear of your condition. I also am frustrated with the fact that doctors still don't know enough about Sarcoid and what they do know is to throw Prednisone (the cure all drug) at it. I was diagnosed in 1994 and I have the chronic form. I am getting worse every year. My joint pain, daytime sweating and blurred vision are the two worst things that I have on a daily basis. Sometimes, I can barely walk. I also have migraines. I have not worked in over a year now and cannot find a job that will accomodate my condition. My last did not understand why I was out of work so much. I tried to get them to let me work from home, but they did not want anything to with that even though I had done that on many weekends to keep them and me caught up on the work that needed to be done. I just signed up on this site, and I hopeful that maybe we will learn something new and it will help you and I cope with this dipilitating disease.  

Hi Alisa,

I'm so sorry to hear about what you are going thru. I discovered a long time ago when I was diagnosed with Crohn's Disease that having a good doctor is imperative. Now that I'm dealing with the lung thing too it's even more important because you have to find doctors who have sense enough to coordinate your care between your auto immune disorders.

As for working, the only job I've been able to do is Real Estate. It seems to be a Disability Friendly job if you get a good Broker to work under. Or you can get your Broker license and work for yourself and take clients when you can working from home.

I work part time now.

What i feel now is new. Just started feeling this extreem heaviness in my chest, cant say a complete sentence without gasping for air, always have to clear my throat and cant get anything to come up or go down. .. doc just put me on prednisone yesterday. 1 month course.

Is this a normal feeling with Sarcoidosis?

It's scaring me because it almost feels like pneumonia but i always get the shot and i dont have other symptoms.

I have read plenty of comments about sarcoidosis do far and I can relate with a lot of hings

I have bern suffering for over 3 and a half years, had terrible cough (that sounds like chest infection) that yo this day still bugs be, muscle and joint aches like no tomorrow, vision problems, hair looks horrible these days, chest pain, always shattered...headaches, dry mouth regardless of how much water I drink, sometimes I wake up in the middle of the night cuz my mouth feels uncomfortable snd desperate for a drink...not long ago my hand's fingers were twitching out of the blue for days...2 years ago had a limp in my neck and ent thought it was branchial cleft chyst but when they took it out they said it was s cystic limph node and they had no idea why....several places lit up on pet scan around the neck and docs didn't know why...no further investigations were done after the operation...but pretty much all tests I had done were localised on the neck region anyway. Been telling my gp for ages About the cough and today went in and she had a listen and when I breathe it sounds like chest infection...which I doubt it is as had this annoying cough for over 3 years now and finally after I pressured her she decided to send me for chest x-ray. Going tom morning for the test.

I have suspected sarcoidosis for a very long time now but my docs are either just stubborn and don't wanna listen or they simply have no idea what they are doing...it's that bad that few days ago when I went in and lined all those symptoms for her, she said to make an appointment and just come with 1 symptom at the time...Gosh, I'd end up seeing her everyday for several weeks in that case ! Lol

It's frustrating...

Another things I've noticed and am wondering if anyone else has experienced and I will apologise in advance for the bluntness of those symptoms lol : can't seem to get rid of the candida thrush. Doc treats it then comes back. I can not tollerate alcohol very well, my liver can't seem to cope with it. I don't drink in general but when I do have a cider or whatever else, I've noticed pain in the liver several hours later. And also in regards to the urine...it smells really bad. The smell comes and goes. This started over 3 years ago too...it stayed with me constantly till a few months ago...ever since, it comes and goes. It is a very bad smell...horrid really.

Anyone else had this and if u did, what did you do about it?

I am in my 29th Year with sarcoidosis and still here. When I first got sick I though it was flu, constant dry cough and night sweats and shakes. Gp gave me antibiotics etc. I was eventually admitted to hospital and was diagnosed with sarcoidosis in the lungs. I take prednisone and numerous other medications. At 29years with this I have learned that the sarcoidosis is in charge not me. My life have change so much, constant shortness of breath osteoarthritis in joints irregular heart beat floaters in eyes. The tieredness/weakness of the body. I fight the illness every day and someday pray they find a cure. I too have had doctors with not much knowledge of sarcoidosis, I know how frustrating this can be. But chin up let's pray for the day they find a cure. God Bless you all out there.    

Hello everyone I'm typing here from Melbourne Australia I have had nights sweats since being diagnosed way back in 1986 at the age of 21, I have Sarcoid in the lungs initially now is dormant but I have compromised immune system, aches in joints, pimple blisters and for ever sweating, I drink fluids to keep hydrated it's worse in Summer but also Winter I still sweat and must keep the fluids, I have had two excellant Dr's in my life are all up with this Sarcoidosis Disease.  The Dr I see now he is right up with this as he had done a Thesis on this horrid disease back in England where he become a Dr.