Sarcoidosis - not enough care and attention given to sufferers

Posted , 65 users are following.

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, 1046 replies

Report / Delete

1046 Replies

Next
  • Posted

    I am suprised to find there is only one comment on Sacoidosis. I have been unwell since Novemeber 12 and have had constant blood teste, xrays and scan, finally a CT scan showed enlarged nymp nodes on my lungs, I had a biospy with the camera down my trhoat a month agao to be told that this was insufficient. I am now waiting on a call to go in for a more invasive proceedure. I wonder what my diagnose will be at the end of all of this. I have many symptons pointing to Sacoidosis, with the latest being blurred vision for which I am now under the eys hospital.
    Report / Delete Reply
    • Posted

      Hello I just had the proceedure in may of this year for a biopsy for my lungs they cut me just under my right breast about 5 inches and below that they put the chest tube in before that I have to go to the oncologist for a pet scan had a ct with dye and went to see the surgeon I have the enlarged nodes on the lung also lots of coughing and eyes hurt alot when it gets real bad the lung doctor puts me on anitbodites one of my big issues is ive lost tons on hair it comes out in hand full in the shower anyone else have that issue I hope that all works out for you
      Report / Delete Reply
    • Posted

      That's really interesting about the hair loss. I've noticed that my hair has thinned dramatically  and mentioned it to my GPs never thought it might be anything to do with sarcoid! I assumed it was thyroid but that was negative so will mention it again as some days I dread getting out of the shower and finding all my hair in the plug hole!
      Report / Delete Reply
    • Posted

      Hi Linda ~

      I have sarcoidosis and sjogren's disease.  Sarcoidosis is really all over my body including the nose, ears, eyes, scalp, skin, lungs, lymph nodes and heart.  Most recent dx was it came back in the middle part of the lung and they are quite large.  The heart and skin is also a new dx.  I have faith that things will get better!  It takes time and paitence to over come some of the hardships that go along with these diseases but with a good family and friend support system and also with the help I've found with a few in here, it does help keep me going.

      I was dx'd a few years ago with sjogren's which is another autoimmune that affects the eyes.  Severe dryness.  I had many procedures with this ungiving disease but it seems to be settling down a bit.  I wear special lenses called "prose lenses" they are twice the size of a contact and hard.  In fact they cover all the eye color and almost as much of the white part ...they are actually very comfortable.  It took 6 mths from start to finish preparing myself with how to place them etc....The thing with the dryness, the eyelids become thin.  When I try to open the eyelid along with lowering the bottom lid so the lens can slide in properly, the upper lid flips back and you cannot get the contact in with it that way.  So, it's an up hill battle but all and all the lenses most probably saved my eyesight.  I was headed towards being blinded in my left eye but with a few detailed surgeries and hard work from my doctors, I pray they are on the mend at present.

      This thread was quite full not too long ago.  Perhaps they were old posts and had to be deleted?  Anyway, I hope you get the help and support you so deserve. 

      Oh, as far as the blurred vision, what are your doctors doing for them?  Are you in the UK? I'm in the US and we have 4 Kellogg Eye Care centers throughout our nation.  I was told, there are many more in Europe, etc.  Might you check into this kind of place?  I guarantee you'll find doctors there that are studied in these diseases and that's all they deal with...well, they deal with cornea procedures and serious stuff like that too.

      Good luck and I wish you well soon.

      Frustrated

      Report / Delete Reply
    • Posted

      Rachael, it can be from both.  While I was on methotrexate for my first round of sarcoidosis, the meds made my hair fall out.  Also, I had thyroid problems related to sarcoidosis and the ENT told me that hair loss is part of sarcoid as well.   I hear you about finding your hair in the shower drain! 

      Going into these new diagnosis and knowing what I know now about sarcoidosis and sjogrens, I'm considering a wig...yes! I said it, a wig!!! They make them so beautiful now a days that one cannot even tell someone has one on...with the laced edging etc...they are simply beautiful and man, what it would be nice to shower and put my hair on instead of battling with the hair loss and embarrassment and humiliation as well.  HAHA! "put my hair on" omgsh what have I become  rolleyes

      Good luck with your situation and I wish you well!

      Frustrated

      Report / Delete Reply
    • Posted

      Thank you for that. I am not taking any medication at the mo but see ENT on Monday so will be interesting  to see what they say as my last consultant has left and it was she that told me that she had seen granulomas in the mass she removed from my head so watch this space!
      Report / Delete Reply
    • Posted

      Good grief it's taken me months to get back to this forum, so apologies for the delay in replying!

      latest thing with me is that I have been getting tiny little ulcers on the inside of my eye lids. Drops have been prescribed but they seem loathe to refer me to the eye clinic!

      my Fess surgery was to do with my sinuses and a mass that they found inside my head(not my brain!) that they wanted to remove. Am sure there is stuff on the web but I haven't investigated further! They are in agreement that I have sarcoidosis in my sinuses but do not want to do any further surgery unless the infections become more frequent. I prefer to use natural remedies as with my age, weight and track record with conventional medication steroids are not for me unless it's absolutely necessary.

      my feet are also giving me hell but now that I am caring for my parents and spend so much time on my feet I'm told it's hardly surprising?! I'm not totally convinced by that but at least I don't have to worry about ulcers as I saw the Dr on Thursday.

      Apart from that alls going swimmingly as they say!!

      Report / Delete Reply
    • Posted

      I've been losing hair since Nov. 2015 and my nails are very thin. I also sweat profusely when I workout.

      Just diagnosed with Sarcoid of lungs. Took almost a year for me to keep pushing GP to find out whats was wrong.

      Report / Delete Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up