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When I was 12 I fell very ill fever loss of weight and was hospitalized they found a large mass in my lungs  and when they finally went for a biopsy it was gone now im 26 and the same thing is happening again the doctor feels I have sarcoidosis but this time the nodules are all around my heart n lungs just sitting around the organs I had a biopsy done but that got them know where because the they said it was undetermined im a mother of four n recently had a baby five months ago im sick and want to feel half way normal can anyone point me n right direction 

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  • Posted

    Dear Elizabeth,  my heart goes out to you and I hope the little advice I can give will help you. It must be hard with four children but you have to look after yourself.  Eat your five a day and listen to your body, don't push yourself when you body is telling you to stop..  This was a hard lesson for me to learn but I believe it is the reason I have had no major flair ups in the last tso years. 

    Take Care 

    n

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  • Posted

    Hello Elizabeth,

    I'm so sorry to hear about the awful time you have had. All the parers on sarcoidosis say that children can't get it but considering they don't know what causes it I don't understand how doctors can say this.

    On the bright side it is a good thing if the sarcoid granulomas are sitting around the organs and have not infiltrated them.

    Are you breast feeding your baby? The reason I ask is because you wouldn't be able to take the medication chronic sarcoidosis sufferers are prescribed.

    If bottle feeding then a sit down and long chat with either your GP so long as he understands about sarcoidosis, because it is a rare immune disease some GPs are not familiar with it. Ask him to refer you to a respiratory consultant again so that you can discuss possible treatment. Different doctors seem to treat sarcoidosis slightly different but the common treatment is steroids (prednisolone) and some doctors also prescribe chemotherapy meds in the more extreme cases but hopefully your doctor won't jump straight for the chemotherapy meds until he sees if you benefit from the steroids. All medications carry risks and side effects but you have to decide which is the more impotant thing, trying the medication to see if it puts you into remission or not having meds and trying to battle on bravely. 

    I have had sarcoidosis for over 2 years now and unfortunately mine refuses to go into remission so I will be on a maintenance dose of steroids for life, but that is rare for people to have to remain on medication.Either way I am happy to carry on with them as I'd rather risk the side effects than feel as ill as I once did.

    Both my lungs were full of granulomas and they originally thought I had lung cancer. I'm wondering if this is the mistake they made with you when you were 12 thinking the mass they saw was something sinister. When I saw my chest x-rays I was shocked and it isn't surprising how the doctor made the mistake. It wasn't until I'd had a bronchoscopy and lung biopsy that they realise it was sarcoidosis. Medical research has moved on since you were 12.

    When they biopsied you this time did they also check your lymph nodes or just your lungs? It is so hard to correctly diagnose sarcoidosis but the good thing is that it usually goes into remission although how long this takes varies from person to person. Stress and worry can make the symptoms worse.

    The fatigue that goes with sarcoidosis is like no other tiredness and the only thing is to rest when you can. I don't know how old your other children are but if they are of school age then  you can try and get a sleep when you put baby down for a sleep. It will help although I do apreciate that the children are on school holiday at the moment. Can any of your family or friends help while the sarcoidosis is active? Even if they could watch the children for a couple of hours you would be able to get some sleep and it would definitely help. I'm hoping that your husband is supportive. A lot of people don't understand how Sarcoidosis affects someone and have the attitude of 'I can't see anything wrong with you therefore you can't be that ill!' It's horrible when people are like this but the only thing we can do is to educate them by printing out what information there is about sarcoidosis and have them read it.

    All auto-immune diseases are horrible and hard to deal with but they do eventually calm down. There is no cure but there is remission and a lot of people never have another flare up. Try and eat a normal balanced diet if your appetite allows but most importantly drink plenty water as this will help filter toxins etc out of your body. (obviously don't go over the recommended daily water intake though as this can be dangerous) Ease off tea and coffee as the caffeine is not good for you at the moment and you might experience heart arrhythmia (rapid, irregular heart beat) which can be due to the sarcoidosis or due to high stress levels and too much caffeine.

    I have an excellent respiratory consultant who is very knowledgable about sarcoidosis. He put me on prednisolone and hydroxychloroquine. The hydroxychloroquine worked wonders on my joints which had become very painful due to the sarcoid (I have sarcoidosis in my lungs, skin, nerves and joints). The medication did take several weeks to work but I felt an awful lot better.

    If I were you I'd also demand that they do a CT-scan and MRI as ordinary x-rays cannot show properly what is there. It is your right to ask for tests to be done and you musn't let them fob you off. I'm assuming they did a blood test for raised calcium levels and ACE levels? Although raised levels point significantly towards sarcoidosis a lot of people have normal levels even though they have sarcoidosis so it isn't a conclusive test.

    I hope this has helped you Elizabeth and I would encourage you to look at the other Sarcoidosis forums on this web site as you will find a huge amount of support. I started a foum here called 'Sarcoidosis not enough care and attention given to sufferers' There are lots of people on that forum who give loads of support and advice so maybe it will help you to chat to them too.

    I am a retired nurse but don't claim to know everything about sarcoidosis as I am still learning myself but hopefully I have been able to give you some advice and support.

    Try and not get too stressed but do go back to your doctor for advice and help and ask for the tests I have suggested and don't take no for an answer. It is unfair of them to leave you without concrete answers and diagnosis.

    Let me know how you get on.

    kindest regards,

    June 

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    • Posted

      Hello again Elizabeth,

      At least you know what you are fighting now which hopefully has lifted the stress of not knowing. You also know that you have beaten your previous attack of sarcoidosis into remission and there is no reson why you won't do it again. Your doctor will probably wait to see how you progress on prednisolone so he will then know whether he needs to add more medications if you are not responding to treatment.

      Once the prednisolone gets into your system, in around a week (it can take from days to a few weeks for the steroids to start working. It varies from person to person) you will hopefully start to feel a bit (hopefully a lot) better. I think the symptom of fatigue is one of the worst symptoms to get because the only help for that is to sleep. Even little power naps are better than nothing.

      I can literally fall asleep on my computer. I hear myself saying "Oh God I'm so tired I'm so tired" and the next minute I'm out for the count. I do feel better after a sleep but I understand how you don't have that luxury.

      Have any of your friends or family offered to watch your children while you get a sleep? Even a couple of hours a day is better than nothing. If you don't start to get some rest then it could mean that your sarcoidosis takes longer to go into remission. If you could afford to pay a child minder for 1 or 2 hours a day that might help although I appreciate that having 4 children may mean that money is tight.

      If the children are all young then an early bedtime for them can mean an early bed time for you and you would definitely feel the benefit of that.

      With fatigue can come depression so please be aware of this and the chances of getting the 'baby blues' which can be more likely too in someone who is fighting Sarcoidosis. Don't be afraid to tell your GP if you do start to feel depressed. He can help you get through it even if it is a bit of group therapy with other mums who are suffering the same. I'm sure many of the sarcoid sufferers on this forum would tell you that they have or are suffering from some degree of depression due to the sarcoidosis or just the fatigue alone. I for one suffer off and on from depression and I know it is the fatigue that does it because when I'm having the worst days of fatigue I feel like everything is a huge effort and I just can't accomplish anything. I get frustrated with myself and finally end up in tears and all I can feel is negativity. I don't have young children to look after, just myself and if I'm having all this problem I can't even start to imagine how terrible it must be for you.

      All I can tell you is that once the fatigue starts to improve the depression does too.

      One last thing. Please read the medication leaflet that comes with your prednisolone. We are all guilty of thinking the doctor has told us all we need to know about our medication but very few do. You need to be aware of side effects in case you think it is just your sarcoidosis causing a new symptom and you definitely need to be aware of what not to take while on steroids e.g. don't take indigestion meds while on steroids because certain antacids increase your calcium levels which you definitely don't want happening when you have Sacoidosis as your calcium is already raise. Always ask your GP if it is okay to continue to take over-the-counter medications or herbal remedies if you normally take these as some of these remedies and medications mixed with steroids can be very bad for you.

      I hope the steroids work quickly and you start to feel more like your old self soon. Remember to get the kids off to bed early so you can get to bed early too. They will benefit from the extra rest too.

      Kindest regards,

      June

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    • Posted

      Hi all,

      I have deleted the argumentative posts and would have intervened sooner but I have been away. If users do have a disagreement please reply politely and not in an aggressive/personal manner.

      See http://patient.uservoice.com/knowledgebase/articles/398321-inappropriate-or-offensive-posts

      Re the discussion about fatal vs not fatal - while I do not know enough about the condition, from simply using patient.info and Google it seems the point is it is rare that it is fatal whether it is the condition itself or complications (I read both) and the discussion got into semantics.

      I hope this helps and users can continue to post in a helpful manner rather than taking discussions off topic which will result in users leaving the discussions which no-one wants.

      If anyone has any issues please message me.

      Regards,

      Alan

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    • Posted

      Hello June ~

      I'd like to offer a truce...agree to disagree?  You are a wealth of info as many others are.  That's what makes these forums work.  So, with that said, truce?

      Frustrated

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  • Posted

    You poor soul. Can only agree with senga. Rest is crucial for you so get to bed as early as possible and don't fight it!
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  • Posted

    Hi Elizabeth

    I'm sorry you are going through so much and on top of not feeling well, having four children surely takes a lot out of you. I would most certainly be concerned with the unsettling diagnosis you received.  Just to calm you down a bit, cardio sarcoidosis is extremly rare and the test they do for it is very painful so many doctos stay clear from testing for that reason.  So, if your doctors haven't talked about cardio sarcoid, you should probably be relaxed as they are probably going in the right direction. 

    I suffer from sarcoidosis which was diagnosed in 2005 biopsy was lungs and lymph nodes...which it came back positive.  I also suffer from sjogrens which is another autoimmune problem.

    Are you having a hard time breathing? That is one of the symptoms that led me back to the doctor with that complaint.  From those symptoms, I had a CT scan which showed nodules in my lungs. The results of the CT scan led me to have a biopsy of my lungs and lymph nodes.

     Have you read up on sarcoidosis?  There is a lot of information out there that may help you in many ways.

    Can you go to a cardio specialist?  I have my heart checked once a year and my brain every 6 months.  My suggestion is first see if you can go to a cardio doctor and perhaps he/she can get to the bottom of your symptoms.

    Good luck, elizabeth and I pray that you find some comfort so you can enjoy your children. 

    frustrated

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  • Posted

    Back again cheesygrin  I just wanted to add, that as many of the other responders, rest is very important.  It might be hard for you with all your children but if you can get some help so you can take a mid-afternoon nap then go to bed at a decent time...I know, this sounds too good to be true...I do understand how difficult is it with four children...they exhaust you with all their needs. 

    All I can do is agree with what June, senga and Rachel, rest, rest rest...take care of yourself so you can be healthy for you kids.  Prayers for you, Elizabeth. 

    Frustrated

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