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Sarcoidosis - not enough care and attention given to sufferers

Posted , 66 users are following.

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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  • rachael88657
    rachael88657 ailsa_june

    Posted

    The more I read on here the more I am convinced sarcoid has affected my whole respiratory system. The doctor at my hospital has dismissed this theory but when I next go I shall be armed with more information to throw at them! 
  • rachael88657
    rachael88657 ailsa_june

    Posted

    My chest has been really hurting today the old baseball bat syndrome is back but I don't know if that's down to infection or just the sarcoid playing up. Isn't this fun!? Not
    • ailsa_june
      ailsa_june rachael88657

      Posted

      It's possible that you have a chest infection but more likely that your lymph nodes/glands are swollen in your chest which can cause awful pain. If you have a productive cough (one that produces greeny sputum) the more likely it is to be an infection and you need to see your GP for antibiotics because every time you have an infection the greater the risk of permanent scarring of your lungs.

      It could also be a combination of both an infection and an enlargement of your lymph glands so either way you need to see your GP so that he can offer advice and also update your medical files.

      I was thinking about this the other day. I am the world's worst for going to my GP but then it dawned on me, how can I expect him to know how I am getting along if I never visit him. Whether I accept his advice or not the importance is for an acurate record to be kept of my health otherwise how can we hope to help other people with sarcoidosis if we don't offer ourselves as case histories?

      Also if we take seriously ill suddenly, how is the doctor supposed to know what is wrong if we don't keep our medical files up to date?

      It was one of those cathartic moments I was having last week but it is true when you think rationally about it. We can't hope to help ourselves or others if we constantly avoid our GPs. 

    • rachael88657
      rachael88657 ailsa_june

      Posted

      I've got both unfortunately but it's not until it flares up that I remember how blooming painful it is!  Never mind back to the doc on Monday!
  • ailsa_june
    ailsa_june

    Posted

    Several months ago having read everyone's posts and noticing the common thread that ran threw them i.e. that doctors never seemed to think of sarcoidosis as a possible diagnoses going instead for TB or even lymphoma, thus putting patients through unnecessary treatments etc, I approached my respiratory consultant and asked him if there was any way we could bring sarcoidosis to the attention of hospitals and consultants nation-wide. Surprisingly my consultant told me that respiratory consultants/doctors are taught to look for TB, lymphoma, lung cancer and sarcoidosis as the main probables when presented with symptoms such as ours. I was really surprised and told him about all our posting and that it seemed pretty obvious that they were not including sarcoidosis when testing and diagnosing. He was quite adamant that these 4 diagnoses were the flag ship they went by when diagnosing. I can only assume that either they have forgotten their teachings or they are diagnosing before they test for sarcoidosis. I really wish he had jumped on board with my idea of sending out a flyer to all major hospitals to make them aware that sarcoidosis seems to be on the increase and not to discount it before test results were in (or even done). I just wonder how many wrongly diagnosed people there are out there. Not only that but how many might be receiving the wrong treatment!!!!!
    • linda39
      linda39 ailsa_june

      Posted

      Here here June, and you well know I was one of those people on TB meds.

      I was told they 'have' to rule TB out firts as if they start othere treatments for a different disease then they are not able to treat TB after.....rolleyes

       

    • morag7
      morag7 linda39

      Posted

      Guess I was lucky. My renal consultant's initial thought was sarcoidosis, although there was brief thought of lymphoma it was ruled out very quickly really. Saw the hematologists 1 day, they arranged a lymph node needle biopsy 2 days later and had the results back a week after that. So while I had a worrying time there it was relatively short and it didn't delay the sarcoidosis treatment by any more than about 2 weeks all in. 

      By the time I saw the respiratory consultant the diagnosis was already in. She mentioned that TB and sarcoid can have similar initial symptoms in 1 sentence but then said in the next "but its obviously not TB and it is sarcoid".

      Her take incidentally is that its more likely to be TB if you're in an area or a job where its potentially a problem (people working in universities in Scotland are the main source because they have a lot of foreign students from countries where TB is still common). 

       

    • ailsa_june
      ailsa_june linda39

      Posted

      Yes Linda it was you I had in mind as I remembered how much you went through at the time so I raged on about how inappropriate it was to start treating people with TB meds before having an absolute diagnoses.
    • ailsa_june
      ailsa_june morag7

      Posted

      Very true and I'm so glad you were lucky enough to be tested and diagnosed quickly and correctly but I still think some doctors are a bit egotistical when diagnosing and jump on the first most likely diagnosis and then refuse to believe it could be something else. Sarcoidosis is said to be rare and I think that is why doctors tend to discount it or at least leave it to the last to test for. I felt so strongly that a gentle reminder of its existence might prompt doctors to put it further to the top of the list of things to test for.I also believe that there are far more sarcoid sufferers out there that have either been misdiagnosed or not diagnosed at all. I wonder how many were told 'it's all in your mind'?

      I guess when you think of it, with world travel now so easy, more diseases that were stamped out or almost stamped out here wil now return. Even cases of small pox which was iradicated have been reported in the UK. Scary!

    • linda39
      linda39 ailsa_june

      Posted

      You jogged my memory June when you mentioned works travel 

      I know there was mixed comments on the sun some negative some positive

      I didn't mention it to

      My consultant last time and she seemed to think it was fine as long of course I put creams on

      I asked her if she thinks I should mention it on my travel insurance   She said maybe in the air of caution.   Does anyone have any knowledge or experienced this

      As very impulsive I booked a week In Cyprus this week and I am going on the 2nd. My illnesses prevented me last year so I felt it isnow  what the doctor would order  haha. Excuse the pun x

    • ailsa_june
      ailsa_june linda39

      Posted

      Linda, I would say always mention every ailment on your travel insurance because if you miss the smallest thing they will refuse to cover you on the smallest technicality. I have seen this so many times.
  • ailsa_june
    ailsa_june

    Posted

    I've uploaded photos of the blister rash on my fingers and on my back. You can just make out the discolouration of the skin but they are not the best pictures as I couldn't hold my mobile phone steady enough or at the right angle but hopefully you can get an idea of what the rash is like
    • linda39
      linda39 ailsa_june

      Posted

      Well done for putting the pictures up

      This is a great way for us all to 'check' things out

      The ankle swelling picture is the same that I get And glad to say it does go down 

    • ailsa_june
      ailsa_june linda39

      Posted

      Well here is a bit more of my anatomy ha ha! My legs and feet are getting very swollen (I won't show you the whole feet properly as they are horrible and deformed after the bad surgery. I try not to even look at them. They are so terribly sore these days. It's a terrible thing to say but I really hate that surgeon who put me in a wheelchair. I was always brought up never to say I hated anyone but I can't help it.

      Anyway the discoloratin on the legs was what I was trying to show. I'm hoping we can compare more than just symptoms as it may help with what is really sarcoid and what is not related to sarcoid because it's too easy to blame sarcoidosis for everything isn't it?

      Good for you Linda, you go and have a thoroughly great holiday. I hope it will do you the power of good. Stay well and enjoy it and do be bringing any rare diseases back with you, souvenirs are okay ha ha!

    • ailsa_june
      ailsa_june linda39

      Posted

      Sorry that was supposed to say 'don't' be bringing back any rare diseases.
    • sharon26982
      sharon26982 ailsa_june

      Posted

      Can you get the blister rash on any part of your body as I have six or seven of them on the vagina I have had for about a year but never thought it could be sarcoidosis x and don't like showing the doc 
    • linda39
      linda39 ailsa_june

      Posted

      I've scrolled my phone to look for picture if my ankles but I did come across the one u took of one of my many mouth ulcers I get. Sorry not a pretty sight but wanted to see how to upload a pic 
    • ailsa_june
      ailsa_june sharon26982

      Posted

      I imagine you can get them anywhere. I developed lumps in the same 'tender' spot as you Sharon and never even though it could be linked. It explains why canestan thrush cream was not at all effective though. And no I am not post photos of said area anywhere!!!
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