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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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  • ailsa_june
    ailsa_june

    Posted

    Hi everyone,

    I just wanted to warn you that I received a private message from someone I don't know but who I think may be trying to sell something. I am going to report this to a Moderator but I wanted you all to beware of people like this who feed on other people's misery. I don't want any of you guy to get upset or mistakenly think that this person has a cure for Sarcoidosis when research and medical teams have not yet found a cure.

    I know most, if not all of you would be sensible enough to see it for what it is 'a scam' but I understand how someone who is suffering badly from the symptoms olf Sarcoidosis might feel at that moment in time, that any help would be great.

    As I've said these people feed on other's misery so please don't be conned.

    I will paste the email I received under this message but I am not going to paste the websites and face book pages that this person urged me to go on to. This is for everyone's safety because the site could contain everything from explicit photos to selling rubbish medication to you. It could even mean getting a virus on your computer from the site if you were to click on the links.

    The email I received on Saturday was as follows;

    Hi,

    June, I understand how frustrating it is to be in this kind of disease, bearing for how many years already. A disease involving abnormal collections of inflammatory cells (granulomas) that can form as nodules in multiple organs.

    Its realy painful at times and my heart realy is out for you.

    By the way, Im xxxxxxx, and as I browse all through this blog, I realized that I think its time for you to have new kind of HOPE for cure. The reason I sent you this message is to introduce you and somehow try to use the product that our patients took with the same illness you have. After 3-6 months of medication, they were able to make it and became free from that disease. Its an "easy way" of treament without underogoing any surgery or operations,without side effects.

     

    If you will be interested to have such HOPE, pls dont hesitate sending me email at xxxxx or you can invite me as your friend in xxxxx  Lets discuss your situation and the products in ful details. God Bless!

    Best Regards,

    If you do receive an email like this please for your own safety, DO NOT ANSWER IT, PLEASE.

    June

  • gustav
    gustav ailsa_june

    Posted

    Thanks for the heads-up.
    • ailsa_june
      ailsa_june gustav

      Posted

      No problem. I hate these vultures and the way they get in touch when you are in a weakened state and try to act like some sort of friend. I've heard of so many people getting conned like this and it grieves me to think that another human being can do this to people who are already suffering and don't need to be caught up in any bogus treatment. I also don't like people using religion as a way to get to people. They are obviously not true to any religion when they do this. Everyone needs something to hold on to at a time of crisis but each to their own religion they don't need some bogus person telling them they're sick because they don't follow a certain religion or words to that effect.

      Sorry the soap box is out again but I was so furious when I received the private email because I feared they had targeted others on this site. Hopefully the Moderator will shove him on his way!!!!

      June x

    • ailsa_june
      ailsa_june rachael88657

      Posted

      Just a quick posting to let you and all the other members know that the culprit who sent me the email has had his account deactivated and all his posts throughout all the forums have been deleted so you can all breathe easy knowing that you won't be getting an email from this man at least.

      I'm pretty sure you all know that anything you receive that does not seem kosher should be directed immediately to the Moderator and he will deal with it quickly.

      The Moderator also said that he had asked for "Help/Contact moderator" links to be put on the site and we will be having a "Report this message" added in future so users can let him know directly about cases ike this.

      So, a huge THANK YOU to the Moderator (Emis) for acting so swiftly it gives us all peace of mind.

      June x

    • MM77
      MM77 ailsa_june

      Posted

      Thanks June for letting us know. Will watch out x

      MM

  • frustrated61
    frustrated61 ailsa_june

    Posted

    Hi June!

    I appreciate you saying the US has the money to study sarcoidosis...however, only a few take advantage of the opportunity!  They are either getting ready to retire or just complacent in what they are doing and don't want to better themselves.  If you are able to, a Rheumatologist deals with the inflammatory issues of sarcoidosis and in the US, that doctor requests all tests!  You just need to find one who is really into helping those with this disease!  Wow, you wrote this a year ago...and here I find it now!  Anyway, keep healthy, June!

    frustrated

  • ailsa_june
    ailsa_june

    Posted

    Hi All,

    I'm just back from my dermatology appointment. I was there to get the result of the latest biopsy. I expected the usual inconclusive result but instead the doctor said the pathology had shown ballooning of the cells. Well in all my nursing I've never come across this so haven't got a clue what it is or really what has caused it. She said it might be due to poor nutrition but I'm pretty sure my nutrition is fine. Anyway she has taken bloods for vitamin and mineral levels. Apparently severaL things could cause it but she isn't saying anything at the moment and I can't find anything on the Net about it. So come on all you clever posters and see if you can find anything about it for me. She wasn't my usual doctor so I didn't have a good raport with her. She just danced around all questions so I took it to mean that she didn't have a clue.

    Any info will be much appreciated as I don't know how long I will be waiting for my next appointment as everyone had gone to dinner!!! Just marvellous eh?

    June xxx

    • rachael88657
      rachael88657 ailsa_june

      Posted

      Can understand the frustration, it's a mystery to me but like you I have had a positive result today thanks to my dentist. She is referring me to hospital as my mouth is so dry and it keeps splitting ever since those antibiotics over a year ago! I asked her opinion and she is more than happy to get me checked so pleased I plucked up the courage to ask if it was anything to do with sarcoid.
    • frustrated61
      frustrated61 ailsa_june

      Posted

      Hi June....

      Is it possibly "basal cell"?  What color are they, if any?

    • ailsa_june
      ailsa_june rachael88657

      Posted

      I always ask about things I don't understand but unfortunately this new doctor didn't answer me except to say "we will wait until the blood tests are through" Typical to keep the patient worrying.

      She gave me the impression she hadn't a clue either because when I pushed for an answer she said she was just repeating what the pathologist had reported.

       

    • ailsa_june
      ailsa_june frustrated61

      Posted

      No, the dermatologist said "Ballooning of the cells" and the report was from the Pathologist.
    • frustrated61
      frustrated61 ailsa_june

      Posted

      Hi June ~

      I just googled "ballooning of the cells" and it has a bunch of info about that topic.  Problem is, it can be this or may be that, so reading would just add to any confusion.  I'm wondering why that doctor wouldn't explain that report to you...even if she was temporary she still should know what she's presenting before she presents...yes?...no?

      Good luck in any case!  Feel well.

      Frustrated

    • ailsa_june
      ailsa_june frustrated61

      Posted

      She didn't appear to know herself because when I pushed for an answer she said she was just going to go with the pathologist's recommendation to draw blood and check that the vitamin and mineral levels were okay but I tried to tell her that my levels wouldn't be okay because of the sarcoidosis. In my opinion she wasn't the best doctor I've met. She asked me if I was eating healthily and I said yes. Then she listed the food I should be eating as though I was an anorexic teenager but the minute I said I was a vegitarian she immediately said that was the cause. Total crap (sorry) I've been a vegitarian for the past 40 years and have never had a problem with my vitamin or mineral levels unless it was due to an illness such as Sarcoidosis. I have been told off so many times for being a vegitarian that it makes me so angry. Doctors should be reminded that our digestive systems are not really geared to be a carnivore but are more geared to be a herbivore.

      Anyway I'm not a vegan or a proper vegitarian because I do eat fish now and then. Our adverts are always telling us to eat less red meat and to try eating quorn instead which I do so I think she just wanted to look like she knew why the cells were ballooning.

      I had no faith in her anyway as I asked her to look at my infected big toe. She looked at it from a distance and asked me if I had problems with ingrowing toe nails, to which I said "no!" I did tell her that I had loads of screws and plates in both my feet and that there was a load of wire wrapped around both big toes. I would have thought she would have ordered an x-ray at least but, no. She took a swab and said it didn't look too infected! I am in so much pain with it I'm now having problems sleeping. I am so fed up with these doctors who seem to put more effort into wearing what looks like their Sunday best than into treating their patients. She had a dress that was far too short because she couldn't bend down without having to hold onto the back of her dress and her high heels kept sliding on the shiny floor! She wasn't even wearing a lab coat. No wonder diseases get spread so easily here. In effect she is taking any bacteria etc home to her family on her clothes because she is not wearing hospital robes.  It's shocking when you think of it. MRSA is rife in the community. 

      Unfortunately my regular dermatologist is off having her baby so I doubt I will be seeing her again as she will be off for maternity leave for some time I imagine.

      I didn't find anything helpful on the pages I surfed and yes most of the comments on ballooning cells just confuses further. However, I will keep trying to find something and will post my findings in case anyone else ends up with ballooning cells. Knowing my luck it will turn out to be one of those things that little is known about.

      I could always throw a party, I've already got my balloons! lol

    • ailsa_june
      ailsa_june frustrated61

      Posted

      I should have said, I don't eat meat or meat products because I get very sick when I do. My late husband used to say I was an expensive date because as soon as I had eaten a steak, or poultry etc etc I was sick. I'd usually just make it home and then I'd be sick all night.

      I'm also a vegitarian because I don't believe we need to kill and eat animals but that is just my belief and I would be the first to say that I used to love the taste of a juicy rare steak. The meat just didn't like me!

      There are also many religions that forbid eating animals and I haven't heard of them having ballooning cells! Trust me to get something unusual!!! rolleyes

    • morag7
      morag7 ailsa_june

      Posted

      Hi June

      On holiday at a friends in Lochgilphead but checking the laptop from time to time.

      Any time I've heard of ballooning of cells its basically what it sounds like. The cells swell up, like balloons, and for some reason they don't lose the excess fluid. I think there are a lot of different causes for it, and its generally just used as a term by pathologists to describe the shape and size of the cells compared to normal ones. Its not meant to be a diagnosis, just a description, then its up to the doctors to determine why and whats causing it.

      Morag

    • frustrated61
      frustrated61 ailsa_june

      Posted

      Blood type does determine what kind of a diet one should be on...type O being the "oldest" type are meat eaters. Type A vegetables and fruits...and the list goes on...There have been many studies done but the one I can recall was "The Blood Type Diet" by Peter J D'Adamo.  If for nothing else, just to see what he wrote about the blood types and how the diets work best...it's a good read.

      Hope you feel better soon!

      Frustrated

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