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Sarcoidosis - not enough care and attention given to sufferers

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ailsa_june
ailsa_june

Hi, I've only just joined this forum but as a long term sufferer of Chronic Sarcoidosis I thought maybe I could say a few things on the matter. First of all I was shocked to read that one of the forum members had been told by his specialist that night sweats are not a symptom of sacoidosis. Nonsense! night sweats and indeed profuse sweating during the day are symptoms of Sarcoidosis. The lack of support for people suffering from sarcoidosis is dreadful but the truth is that not enough is known about the disease and especially amongst UK doctors. American doctors are more on the ball but then they have the money for research etc in the US. I spend my entire time fighting and arguing with health people, trying to get appropriate treatment for my various symptoms. Luckily I have an excellent respiratory specialist but that is all he is a respiratory specialist so when it comes to all the other problems I have due to sarcoidosis such as skin, eyes and nerves I have to fight to get tests and treatment as either no one believes me or they think it is up to my respiratory specialist to deal with it. He in turn kicks it back to my GP (rightly so) and at the end of the day nothing gets done as no one will take responsibility for the symptoms! It's a ridiculous situation but it boils down to money as all these MRIs and tests are very expensive and neither party wants to foot the bill. The over powering fatigue is dreadful and I can literally fall asleep in mid conversation. Also the depression that comes from constantly feeling unwell and the frustration of fighting for proper care also takes it's toll. The sweating I spoke about earlier, can not only hit at night either as I find that expending a little energy just hoovering a carpet can cause sweat to literally drop off me. At the moment I have severe pain and severe pins and needles in both arms and hands and it has taken me 6 months to finally talk my GP into allowing me to see a neurologist. I will see her tomorrow but my respiratory specialist told me not to hold out too much hope of being believed! So you see even the doctors who understand Sarcoidosis know the taboo within the health sector so what chance do we have? I was originally on high doses of steroids but unfortunately they caused me to have a psychotic break so I had to be taken off them so I am now on an inhaler and mucosal thinner to try to combat the extremely thick, sticky sputum I cough up.In one sense I suppose I am luck as I am already in a wheelchair due to nerve damaged feet (hospital screw up!) but I had to change to an electric wheelchair because with being so breathless and having nerve problems in both arms I couldn't propel myself around in my manual one. I say I'm lucky to be in a wheelchair only because without it I wouldn't be able to get around at all because of the sarcoidosis. I sometimes wonder if UK doctors have a bad attitude towards sarcoid sufferers because they think everyone only has the acute sarcoidosis and it would probably resolve itself or even come and go undetected in it's own time. I really don't know but what I do know is that they need to become better informed about this disease and be more caring when treating their patients. It's not a deadly disease but it certainly takes its toll on the sufferer and the symptoms need correct and fast treatment before they become a real problem. Keep your chin up fellow sufferers and don't be scared to be pushy with your GP. He has a comittment to treat his patients whether he thinks its serious or not. You have a right to demand to see a specialist or to get a second opinion but do remember that not everything is linked to your sarcoidosis so if you develop a new problem make sure you get it checked out properly and don't be fobbed off with your GP saying it's just a symptom of your sarcoid because it could be a different health issue altogether.

21 likes, 1045 replies

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  • CassyS
    CassyS ailsa_june

    Posted

    It looks like it wont be until aug until I'm seen by the CT department for my chest CT. My resp consultant is trying to rush it through so He can do the lung biopsy & then get the definate diagnosis before I can start treatment. Bit fed up with even more delay but this seems the norm after hearing of others experience.

    Off to the GP to see if any of my symptoms can be managed in the meantime as struggling a lot with the joint pains, breathlessnes,chest problems& an annoying rash. I hope she can do something/ give me something & not say it's up to the specialist to sort me out. Also as June says symptoms may not always be sarcoids & as still waiting for definate diagnosis thought best to have an MOT.

    From my discussion on the forum I do feel my consultant is right with the diagnosis as  I so many of the symptoms you guys have. Just need it in black & white  

    • linda39
      linda39 CassyS

      Posted

      I do feel they sit on the fence a bit with diagnosis of Sarcoid, they seem to think it is something else first !!!

      Like me being treated for TB for 3 months....

      I am sure your GP can help in some ways to get you some interim releif, especially when you have a baby to look after too, that makes it double hard work.

    • morag7
      morag7 CassyS

      Posted

      There are some things that your GP can consider prescribing. If the breathlessness is bad an inhaler will help. My GP has given me prescriptions for antihistamine cream or antihistamine/antifungal combined which helps the odd time when I get a rash - he's not sure if sarcoid or just its developed because my body has been through a lot so the immune system may be a bit weaker. 

      Guess I was lucky because I didn't really have much delay in diagnosis. Rushing through a CT scan so its done in August...I got a CT scan within 2 weeks of the consultant requesting it, could have been a week except I was away. Yes I know, you're all dead jealous now aren't you? ;-)

    • di01694
      di01694 linda39

      Posted

      I guess you can be lucky or not with the consultant you get referred to. The hospital that did my first chest X-ray and the GP freaked out when they the films, and I was told to pay to see a consultant because the NHS was in a financial crisis 14 years ago and there was a 3 month delay to see a consultant - anything sound familiar? Anyway, the man I saw took my history and bothered to check whether I did have allergies and I didn't - they had been giving me antihistamines for years - and suggested Sarcoidosis at the first appointment. He sent me for lung function tests and a CT. I knew something was wrong when the CT nurse went from being 'cheeky chappy' chatty to using the NHS serious voice. I also had a lung biopsy, where they managed to give me a pneumothorax. It should have been day surgery but I ended up in hospital overnight. Fortunately it was a minor tear... But the end result was a clear and definitive diagnosis. How things can have gone backwards since then is baffling, considering the financial situation was just as bad and medical science is supposed to have improved.
    • linda39
      linda39 di01694

      Posted

      I must say I am very lucky with my consultant now that I am under for Sarcoid. I can even email here with any problems and her secretary is always on the ball [although not had a update from my last corresspondance yet re tingling in hands]

      Also my rheumatologist is very good too.

      I feel I have had very good care & attention from the onsett, apart form the intial TB scare, but in all fairness whilst under that clinic they could not of been more attentive.

      As you say the medical services financial situation is scary, and us genuine people have to take the backlash of it all.

    • ailsa_june
      ailsa_june CassyS

      Posted

      That's a ridiculous long time to wait for a CT Scan Cassy. Your consultant could go ahead with the biopsies though. He doesn't have to wait for the CT Scan. In fact he should be able to diagnose sarcoid or several other diseases easier from the biopsy than the CT scan. Even if he did the scan he is still probably going to have to do the biopsy as the scan could be inconclusive. You would think he would want to move things along. What is wrong with doctors these days? It is so unfair leaving patients worrying themselves stupid as to what is wrong with them. Maybe you could try phoning his secretary up and asking her to pass on a message that your symptoms are getting worse and see if he could contact the scan people to move you up the list or at least to do your other tests while you are waiting. It's worth a try or you could go to your GP and ask him to write a letter to hurry things up.

      Good luck anyway xx

    • CassyS
      CassyS ailsa_june

      Posted

      Saw the GP today & she is reluctant to prescribe anything to ease my symptoms until she has been advised by the consultant. So is going to write a letter to see if things can be hurried along & for some advice. ( June you read my GP's mind) So I've just go to keep going in the meantime.

      i did call cons secretary few weeks ago about the delay & to see if I can be seen sooner... Still waiting for a reply.

      June my consultant is planning another biopsy but wants an up to date CT first before. I'm wondering if I should push for the biopsy before the CT? Though not sure he would do it

      c xx 

    • ailsa_june
      ailsa_june CassyS

      Posted

      I can understand your GP not wanting to give you something when you don't have a concrete diagnoses as giving the wrong medication can sometimes be as bad as having the disease.The consultant sounds like the cautious type which sometimes isn't a bad thing and maybe he is concerned that he would cause some sort of damage to you if he went in 'blind' so to speak. When you think how tiny the camera (fibre optic) is, it would be a disaster if he nicked something he didn't know was there if you get my meaning. Not trying to scare you or anything and as I said before it could be done before. However it isn't fair leaving you so long without either a diagnosis or treatment. The last thing they should cause is scarring of the lung because they have left you too long without treatment. I had my biopsy before my scan but at that point they thought I had wide-spread cancer of both lungs when they looked at my ordinary X-Ray so they thought they were just going in to get a piece of tumour. It's possible that is why they did my biopsy first.

      I hope they hurry up and ease your anxiety too as stress and anxiety are also bad for sarcoid sufferers.

  • ailsa_june
    ailsa_june

    Posted

    I keep forgetting to ask you all a kind of crazy question. When I was first diagnosed or rather during the time when I was being diagnosed I kept getting an odd smell in my nose - well two odd smells actually. One was a bad, rotting sort of smell but then it changed to a smell of Hyacinths! The hyacinth smell was so strong and I couldn't figure out where it was coming from. I don't use sprays or plug ins etc and I don't have any flowers anywhere. So, my question is, did anyone else ever experience a strange smell.

    Also I had a craving for sherbet and ate tons of the stuff. It was a real big craving like the ones you get when pregnant. You just have to have whatever you are craving.In the past year or so it has been Fab Ice Lollies. I have no appetite for food and the thought of it makes me nauseous. I've tried to eat good balanced food but by the time it is ready I can't face it and have thrown away many plates of dinner. I just wanted to know if anyone else is or has suffered similar.

    If there are any other odd things you notice since being diagnosed with Sarcoidosis, please share and don't be shy as no one is judging you.

    June xx

    • linda39
      linda39 ailsa_june

      Posted

      Odd enough I seem to of lost my smell altogether on a majority of things, not sure if this was before Sarcoid though as its been a while now.

      Although for past couple of weeks ive been getting like waves of kind of musty money, if that makes sense, this seems to of settled down now but was driving me mad.

      We are a unique bunch arent we. xredface

    • morag7
      morag7 ailsa_june

      Posted

      Sorry, no strange smells or cravings or anything like that. Glad I didn't smell hyacinths, its one scent that's guaranteed to give me a headache very quickly! 

      At the moment most of my symptoms are related more to hay fever but sarcoidosis just makes them worse. On regular blood tests - everything seems relatively normal and the respiratory consultant wants to keep it that way. When I invent a foldaway tap that fits neatly into a vein and can then get tucked away inside the arm out of the road then I'm going to be a millionaire ;-)

    • linda39
      linda39 morag7

      Posted

      Come on Morag...take up the challenge, we will all assit -what a great idea.

    • morag7
      morag7 linda39

      Posted

      Already done a deal with my GP that if I manage this and market it he can get a share of the proceeds but I guess I could you guys in as well. In return my GP is going to share the proceeds of his cure for the common cold with me. Yeah right!!!!!!! cheesygrin
    • ailsa_june
      ailsa_june morag7

      Posted

      Yes that was the problem. It was such a pronounced smell it was making me almost sick. I started to smell it again the other day but thankfully it seems to have gone again
    • linda39
      linda39 morag7

      Posted

      We are far more reliable support. cheesygrin

    • ailsa_june
      ailsa_june linda39

      Posted

      My sense of smell was always acute. My late husband used to say I could smell alcohol on him a half mile away ha ha! The smell drove me crazy. The rotten smell lasted the longest so I was assuming it was the sarcoid affecting the lining of my nose as I kept getting nose bleeds.

      It's probably nothing to do with sarcoidosis but I thought I'd ask you all in case we had found a new symptom - God forbid!

    • linda39
      linda39 ailsa_june

      Posted

      Ironically I had 4 days of noseblleds last month, as soon as I lifted my head off of the pillow they would start for no apparent reason.

       

    • ailsa_june
      ailsa_june linda39

      Posted

      I know. Horrible, isn't it? I ended up having to go on atenalol as I noticed my blood pressure was creeping up too. So far no further nose bleeds but the sensation is there so I'm just wondering if it's going to start up again. Keep plenty of kitchen roll at the ready - far more absorbant than paper hankies!
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