Sarcoidosis - not enough care and attention given to sufferers

Hi Linda, Sorry to hear you are having so much trouble getting a diagnoses. Unfortunately there are only 19 out of 100,000 people in this country with Sarcoidosis so hardly surprising that the doctors aren't up to scratch with their diagnosis. I'm surprised that the lung biopsy did not confirm the Sarcoidosis (maybe the technician wasn't so good at his/her job!) What is the more 'invasive' test they have lined up for you? I suppose I was lucky (if you can call it that) in the sense that I have such chronic Sarcoidosis that my ACE blood test was off the scale but my specialist did say that many sufferers don't show anything in their blood test! Weird eh? I know have chronic carpal tunnel syndrome caused by the sarcoidosis so it just shows you how it hits your immune system and causes so many symptoms. I'm sure you are finding as I am, that you have to fight to be heard and believed. I get the GPs nodding and smiling as though I am a nut so I no longer confide in them. My spine and joints are so terribly sore right now too and yes the blurred vision is a real problem. Don't be surprised if they don't find anything when you go to the eye hospital. It is so hard for anyone to actually see the sarcoid sometimes even though it is really there. When I was first diagnosed they thought I had lung cancer and they also had to discount lymphoma because the sarcoidosis causes the lymph glands to swell so much. My chest x-rays looked shocking when I was first diagnosed, little wonder they thought it was cancer. Don't worry if they decide not to give you any treatment because in many people the disease fizzles out on it's own. Chronic cases are treated with high doses of steroids which carry their own problems such as bone thinning. The doctors also might give cancer killing drugs like chemotherapy ones if the steroids don't work . This is something I am facing at the moment and will be seeing my specialist this coming Friday so will see what is happening. I'd really like to keep in touch if that is okay with you and would be more than happy to offer any support I can as I know how scary it is at the beginning. This goes for anyone who is awaiting diagnoses or has been diagnosed.

Hi Alisa,

I am having a mediastinoscopy, its basically they are making 3 incisions in my neck.

I am back to the eye hospital tomorrow as I am now under the Uveitis clinic.

In all honesty apart from the hnaging around in between results or lack of I have been dealt with quite quickly, but this is now all through the hospital, I have not been back to my GP since see the rheumatologist.

Oh ive just had a call i;m going in on Sunday.

Hi Linda,

I'm really sorry I meant to get back to you before you went in for your procedure. I'm thinking about you and wish you all the best. Let me know how you get on when you are feeling up to chatting. I went to my appointment on Friday and have been told that my lungs are now permanently damaged so will probably be on steroids and other meds for the rest of my life. I'm also about to start on Hydrochlorquine for the nerve damage and joint pain so fingers crossed it will help. Also had bloods taken as the specialist suspects that the Sarcoid is getting bad again but he will write to me when he get the results. I couldn't believe that after 6 weeks the Neurologist had still not been in touch with my specialist with the latest test results! It's just a joke the length of time they take to communicate with each other. I could tell my specialist was not happy but hats off to him for keeping his cool. Of course he is unable to start any real treatment without the full results but he did decide to try the hydrochloroquine in the meantime. Anyway enough about me. I'm really hoping that everything turns out good for you and that you get a proper diagnoses. I always think that people feel better when they have a full diagnoses and know what is happening. It is scarier not knowing and makes you feel worse I think. Feel better soon and take it easy. Hopefully we will chat soon. Kindest regards, June

Hi June,

Thank you for your kind words.

My op got cancelled at 4.30 on Monday, but I was told that evening that it would be carried out Tuesday afternoon, which it was. It wasn't 3keyholes it was a 3" cut just above my breastbone. There is no dressing on the would just a plastic coating so it is not a pretty site. I was sent home yesterday morning, but got this horrid annoying coughing which is making it painful. Hopefully get my results on Wednesday!!! Oh so sorry to hear what you have been informed re your lungs, is this just from Sarcoidosis? That's awful re your results and communication. I must say I have been luck with being kept up to date etc.

Today it all seems to of hit me, whereby I've been quite relaxed about it all....but now it seems like the 'real thing'

Actually how did they discover you had sarcoidosis, did you have a biopsy and which type. Also how long have you had it?

Kind regard

Linda

Oh you poor thing! First to have it postponed, which is nerve racking in itself, and then to find that you have a 3" wound. That's dreadful. They should have talked you through what was happening way before your op. Just not acceptable! I'm sorry it's all suddenly hitting you now too. I doubt the messing around you had over the weekend has helped either. I know it's really worrying for you having to wait for your results too and no amount of people telling you to 'think positive' will help. People who have never been through something like this just don't get it. The good news is that the majority of people who get sarcoidosis don't need treatment and it burns itself out often never to return. For others there is treatment and it is not a life threatening disease unless it has damaged major organs like the heart or lungs. I know it is worrying for you because you don't have a diagnoses of anything yet and all I can say is to try and not think of what it might be. No matter what the diagnoses you sound like a fighter and the medicines today are far superior to what they were so everyone is in with a great chance nowadays. When they first thought I had lung cancer, it took my GP half an hour of stuttering and coughing his way through trying to tell me. Not to say his mobile phone kept going and he informed me that he was waiting for a relative to tell him their results! So much for keeping his private life separate from his work! Anyway I just took it to be lung cancer and was told I would have a lung lavage and biopsy of my lungs and glands so I thought 'fine, they are doing something at least', but as I left his office it just hit me like a sledge hammer and I have to say I burst into tears and was whisked away into a side office to compose myself. So I totally get how you must be feeling right now. To be honest, it was his humming and hawing that got me more than the prospect of fighting lung cancer. I just wanted to know so I could get on with it. However I went for my biopsy and during the procedure my heart went into SVT (supra ventricular tachycardia) so they had to get an ambulance and ferry me 2 minute (yes I'm serious!) along the road to the old hospital because the new one did not have the facilities to deal with me. My poor daughter was yelling at them to do something for me - the poor thing thought I was going to arrest and these idiots didn't know what to do. I got sorted out eventually and was told that the biopsy was a definite positive for sarcoidosis as was my ACE blood test which was apparently off the scale. (It doesn't always show in a blood test in sarcoid patients though, so if it's not showing in yours it doesn't mean that you don't have sarcoidosis. I saw the specialist who said it was the worst case he had ever treated of sarcoidosis, but at least it wasn't lung cancer! Yes, the damage to my lungs is totally due to the sarcoidosis but it is probably because they now think I have had it for a lot longer than when it was diagnosed last March/April.I cough a lot and often have very sticky green sputum (sorry that's a bit too descriptive!) When it was at it's worst I had a rip roaring chest infection too. In fact the chest infection was what drove me to the doctors. I'm not good at going to the doctors but I was so breathless I just had to go. First I was sent for an X-ray which was quite shocking in the fact it was very obvious there was something very wrong, hence why they though it was lung cancer.After that I realised I had skin lesions and eye problems. I've actually got a little sarcoid cyst on the white of my eye. I lost loads of weight very suddenly and I started to lose loads of my hair. I used to sweat profusely (something I've never done in my life). and the slightest exertion would cause the sweat to run off me. Like hovering my flat for example. I was also told that the lymph glands in my chest are massive and I have to say I get severe pain sometimes from my glands especially the ones in my neck. It is like having a severe dose of the mumps! Although I have officially had sarcoidosis for 1 year now it is possible it has been there since 2001 because I had 3 bad bouts of severe chest infection one after the other but as I was living in China at the time I thought it was due to the dreadful air pollution there. What about all your symptoms. What did you start with? How were you feeling at the beginning? Did you think you were just maybe run down or did you think something serious was going on? You try and keep your chin up Linda. I am thinking of you a lot so don't think you are alone. I hope you have someone to lean on at home. Contact me any time even if it's just because you are feeling a bit down or a bit worried. I'm always on the computer so will pick up any message.

Kindest regards,

June

Hi ... I was first diagnosed with sarcoidosis in 2001. I was told by the doctors it would go on its own and never come back (which was not the case) since then I suffer from other symptom flare up constantly but I never get much feedback of the doctors. My tattoos and scare tissue get sore nodules in them and im tired almost constantly (for which the doctor put me on anti depressants, which made me exhausted and unable toget out of bed ) . I get a rash on my feet which on some occasions does go elsewhere. Also accompanied by the usual shortnes of breath.the achy jounts . I also get a lot of headaches. The only test I have ever had done is a chest xray with my original diagnosis and one this week. The doctors kept giving me cream for my rash saying they didnt know why my tattos were getting lumps in them and saying it was not a symptom of the sarcoidosis. Obe doctor even said that my diagnosis in 2001 was unclear because I only had xray and blood tests. I feel like a hyper condriact and the doctors wont listen ... any advice ???