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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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  • linda39
    linda39

    Posted

    Hi June

    Thanks for your response

    I didn't think the groin was relating but my husband suggested it maybe another 'joint' pain

    Ankles.....I had a two week haste of swollen ankles when my sarcoidosis first occurred so thought it was possibly a reoccurrence

    I am seeing the rheumatologist after Easter so will go through it all with her

    L x

  • sharon26982
    sharon26982

    Posted

    Last year I had swolen ankles - in fact I was unable to walk for five days had to use a pota loo next to my bed

    I was given two nurofen four times a day with two paracetamol total four tablets tour times a day for one week

    And they slowly returned to normal after that went I had a migraine for a week and had to ly in the dark and not move my head again could not walk t the loo as the head pains were too bad -

    I believe this was sarcoyd

    There was no other explanation x

    • MM77
      MM77 sharon26982

      Posted

      Hi All,

      The site has been very quiet recently.. I am not quite sure how to use the new format... It is quite confusing.  I will do my best x

      Hope you are all feeling better.

      Went to see my rheumatologist yesterday and she is pleased with my progress. Also explained my lung x rays, compared them to the ones taken over a year ago and also went through my breathing test results. Although lungs are not her area , she seems to be very clued up with it. 2 of 3 of the breathing test results have improved significantly ( about 30% improvement) and are the same as norm, the diffusion test is the same though, no improvement and sits at 60 % but as other areas are so much better they are happy with the progress. My joints are pretty good too after the new meds with exception of the inside of my ankles. She thinks that Spider-veins are to do with previous swollen ankles and one of the reason would be stretch of the skin and tissue. All good, I don't need to see her until Nov 14 and Pulmonary specialist until March 15. Will have to get my eyes tested tho..  Got a letter through from my GP.  Just need to get organised.  Other complaints just now are feeling continuously tired and lack of energy or thrive and lymph nodes can still be painful (usual chest, under arms, groin, back of the knees, inside the elbows..). Other than that feeling good and feels that I have come a long way since October 2012

      Love to you all

      MM

    • linda39
      linda39 MM77

      Posted

      Hi,

      I wasnt aware the site had changed its format, so thanks for posting the message and stating this.

      Glad to hear things are on the up for you.

      I have got to see my rheumatologist on Monday and respirtory 8th May.

      I am quite poorly at the moment with an awful cough which started on Saturday, then Sunday I woke to a bad nosebleed, followed by another in that dau when I sneezed, the same on Monday morning I woke coughing and another nosebleed, then on waking Tuesday morning to another nosebleed.  So I telephoned my GP surgery and got an appointment 2 hours later.

      I have been put back on antibiotics [ after only being off of them 3 weeks for my chest]  

      He said I have sinusitis and a very congested left lung.

      My ribs are so sore from the coughing along with lung pain, so for the past two days ive been so lethargic.

      Ive been on the Hydrchloxequine ..... for two weeks now, slight improvement on the ankle swelling but that may just be a coincidence as ive been doing less recently due to feeling so rough.

      Hope you all had a lovely Easter.

    • MM77
      MM77 linda39

      Posted

      Aww Linda, so sorry to hear that you have not been feeling the greatest.. Thankfully you have got your Hospital appointments so soon, so hopefully they can help you. I saw the better improvements from Hydrchloxequine after being on them for 3 months.. but I believe it is pretty individual how long it takes, my ankles however are still painful to touch but are not swollen, the rest of my joints can be painful and stiff but nowhere near as bad as they use to be.  I use inhaler when I get bad cough, but have not needed it lately either. Maybe ask from your doctor about the inhalers, they really did sort me out.

      Hope you are feeling better v. soon

      Love

      MM

    • linda39
      linda39 MM77

      Posted

      Thank you for all your advice. I will mention inhaler next time I go

      this is the worst chesty cough I have ever had and it is day 6 and I feel worse each day

      x

    • morag7
      morag7 linda39

      Posted

      If your cough is also partly due to having a load of "gunk" choking up your lungs it might be worth talking over the use of a mucolytic with your doctor. It basically breaks the stuff up and gets rid of it for you. One of my pals with asthma has problems with a persistent cough every time she gets a chest infection and quite often its due to that as much as the infection. Since she was given them to try she's had far fewer problems. 
    • di01694
      di01694 linda39

      Posted

      Hi Linda,

      You should also ask if you need nebulising. The last time I had a bad chest infection - and a consultant told me chesty cough = chest infection - I found nebulising really helped.

      di

    • linda39
      linda39 morag7

      Posted

      Thank you, I will make a note of it.

      A cough every month is getting me down...along with the price of prescritions evil

    • CassyS
      CassyS linda39

      Posted

      Hi All,

      You are right about this format it will take abit of getting used to.

      MM great to hear that things are improving long may they continue lol

      Linda sorry to hear you are struggling at the moment. Hope it gets better very soon.sad

      I had my Ebus about 3 weeks ago. Consultant said was bit more complex than usual as he was unable to place a latex balloon during the procedure to keep the airway open as I'm allergic. I coped better than I thought I would but found the biopsies very uncomfortable. I thought you were supposed to forget everything that happens but just like the time before I felt everything & remembered it all. I don't know if I need extra sedation than most???? Since having the EBus I've been suffering from a viral resp infection, possibly linked sad  & like you Linda it has been awful esp all the gunk. It's really knocked me. I think I am finally seeing light at the end of the tunnel, I hope. doc advise was to rest. With a hyper 18 month old that's impossible

      I also saw the eye specialist on Monday who said that there is sign that inflammation has been present in my eyes but no damage has been done. razz yay some good news. I asked I should see him annually but he said there is no need unless I notice spots in front of my eyes as it's a sign of inflammation. I thought people with sarcoids are supposed to have their eyes reviewd every year  as damage can be done before symptoms appear or am I wrong?

      Hope to be back at resp clinic for results in next few weeks

      Cassy x

    • linda39
      linda39 morag7

      Posted

      Hi All,

      I am not sure how to start a new posting - any ideas???

      I went to the hospital today to see the Rhematologist, she was pleased the way I didnt have any problems with the Hydrochloxiquine, she immediatley sent for me a chest xray and blood tests.

      She feels that being I have had two lots of antibiotics in a month that these will not cure my chest infection, she suggest having a blast of steroids to keep it at bay.

      But as I am seeing my Sarcoid consultant on 8th May she felt it best to let her make the decision.

       

  • MM77
    MM77

    Posted

    Hi All,

    Hope you are all good, I will try to catch up with all the messages I have missed while away. I got back last Monday night and back to work on Wednesday. Just trying to settle back in. I do have slightly more energy just now than usual, so trip done power of good to me and of course seeing my mum and loads of old friends and family was great too.

    Linda, I get groin pain sometimes but it is really to do with swollen lymph nodes. I can also get pain in back of my legs (knees) and mostly under arms and my chest and under ribcage. Under arms is pretty much a daily thing. My symptoms too started with swollen ankles so it seems to be that we have got quite few similar symptoms, might be that you are the same with lymph nodes.. The meds you are on just now should help to prevent it in future but they do take around 3 months to start working properly.

    Wishing you all well,

    Love

    MM

    • linda39
      linda39 MM77

      Posted

      I have just noticed some of the changes / additions to the text box

      1.  it is good that things can be in bold

      2.  also an italic option

      3.smile can add expressive emoticon

      4.  OR EVEN UPLOAD A PICTURE - this could be so helpful when we are referring to rashes etc....or maybe even a photo so we know who we are talking to.....I did say maybe though....ha ha

  • sharon26982
    sharon26982 ailsa_june

    Posted

    Hi all this is me 😀

    i like the new format 🌻

    sorry to hear some of you are having a bad time of late x you are all very strong woman I read what you are or have gone through and this helps me more than I can express . Hope you are feeling better soon 💐

    i have not been to well since I started t reduce the steroid tablets - my cough is back 

    pain in my upper back and sor rib and very sleepy x don't feel like decorating now - ha ha x hope the weather is good for every one to day x 🌞

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