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elizabeth44178
elizabeth44178

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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  • senga66
    senga66 elizabeth44178

    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

  • ailsa_june
    ailsa_june elizabeth44178

    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 

    • elizabeth44178
      elizabeth44178 ailsa_june

      Posted

      Tests came back positive for sarcodiosis I just dont know what's next my doctor is prescribing me on prednisone 
    • ailsa_june
      ailsa_june elizabeth44178

      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

    • Emis_Moderator
      Emis_Moderator ailsa_june

      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

    • frustrated61
      frustrated61 ailsa_june

      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

    • frustrated61
      frustrated61 elizabeth44178

      Posted

      I would think you are starting to feel better.  If not, there are other medications that can be prescribed for this situation.  I've been on several.

      Good Luck!

      Frustrated

  • rachael88657
    rachael88657 elizabeth44178

    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!
  • frustrated61
    frustrated61 elizabeth44178

    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

  • frustrated61
    frustrated61 elizabeth44178

    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

  • elizabeth44178
    elizabeth44178

    Posted

    Question how do we work I mean there is just so much in can do im overall tired n if I do to much my heart starts racing n sometimes it becomes hard to breath im just stressed because I need to be working but scared how ill feel at a job
    • rachael88657
      rachael88657 elizabeth44178

      Posted

      You need to be open and honest about your condition. You should be covered by the disability discrimination act depending on how long you have had sarcoid. I understand completely where you are coming from but speak to the disability advisor at your job centre. I'm being pressurised to return to work despite the fact I care for both my parents it's a mine field out there as DWP don't make it easy for any of us and we all know what stress does to sarcoidosis!
    • ailsa_june
      ailsa_june elizabeth44178

      Posted

      Hi Elizabeth,

      You need to first talk to your GP about being signed off work so that you can receive sickness benefit. You can also look into obtaining an application form for requesting PIP (formally DLA Disabled Living Allowance. I don't know how the new PIP benefit works but if you don't claim you won't get. Just remember when filling in any forms of this kind you have to think about your worst day and although you must be honest do not put down that 'sometimes you can manage and sometimes you ca'nt' because then they won't consider you as having a long term problem.

      The other thing you can do is talk to your boss and tell him/her how the illness is affecting you and can they allow you do maybe do part time work until you are feeling better. You must let them know about your illness because then your job should be safer. They cannot fire someone who has been honest and up front with them but if you keep the truth from them and start having to take sick days they can start giving you warnings about your absents from work. If they are good bosses and you are a good worker then they won't want to lose you so should be able to come to some agreement over your work.

      Getting stressed over your work is only going to make your illness worse so please go and chat to them. People tend to think that their boss is unapproachable but these days there are rules they have to follow. If your hours go down you can apply for income support and your tax credits may go up. The best place to go and get information is the CAB (Citizen's Advice Bureau) Phone them first and make an appointment because if you just call in chances are you will have a very long wait and you still might not be seen.

      Even if you find you can continue working it is best to go and find out about these things anyway in case your illness becomes worse and you have to take time off.

      I hope this has helped

      June

    • ailsa_june
      ailsa_june rachael88657

      Posted

      Hi Rachael,

      I would like to say that the Social Work department should be made aware of your struggles to look after your parents, hold down a job and cope with your own illness but getting a social worker in the first place is nigh on impossible these days. I have been waiting 3 1/2 years and all the other agencies have told me to stop saying my daughter helps me otherwise I will never get a social worker. If you tell the social work department that your parents now have no one to care for them because you are having to go back to work (a white lie but it's the only way to get any help) they will come out and access them and their needs. Also if they are over 64 then they will get help as they come into the Care of the Elderly category as opposed to people under 64 who are classed as 'too young!' to get any help (this is what they said to me).

      A welfare officer is the best person to contact if you are struggling with money. They will steer you through the benefits available to you. My welfare officer found that I wasn't claiming everything that I should have been and even got one benefit backdated 2 years. I was amazed and very glad as I was struggling so much with money. Now I can get a cleaner in to help me now that I have a bit extra money.

    • rachael88657
      rachael88657 ailsa_june

      Posted

      Hi June thank you for that advice. I also happened to read your comments to  Elizabeth re work. I speak from experience when I say that talking to my work did no good at all as far as they were concerned I had too much time off sick and harassed me until I had a break down and my GP would not let me return. I thought I had a good employer but No I was persecuted to the limits of my sanity and had to take redundancy. Now I find that DWP have taken over the harassing despite looking after my parents they want me to go back to work. Their indifference is notorious and incompetence well I won't bore you! I am terrified of returning to work and even though I had the break down 3/4 years ago the emotional psychological scars remain to the degree that just last week I fell apart during an interview at the job centre. This also has knock on effects with the sarcoid as I am very slow in the mornings, getting down stairs is a tortuous exercise and my chest is playing up again. But as far as DWP are concerned I should be going back to work my parents obviously don't matter and I am made to feel like a scrounger.

      Anyway enough of a rant from me but as I say I speak from bitter experience  regarding my history with work sarcoid and DWP!

      I will investigate getting a social worker involved although as my mother has a care package I doubt there will be much assistance forthcoming.

      thank you for your help as always a fount of knowledge!

      regards and gratitude

      rachael

    • ailsa_june
      ailsa_june rachael88657

      Posted

      Oh Rachael I am so sorry you have had such a rotten time with your employer. You really need to go the CAB and ask them about getting legal aid in order to fight your case with your boss. They are not allowed to treat their employees this way regardless of how long you have been sick or how many days off you've had to take. Your illness is genuine and therefore a solicitor would certainly fight in your corner. You also need to get a letter from your GP to send to your employer regarding your illness. The more paper proof you have the better explaining why you have been off work and the fact that you have been medically advised not to work for the time being. Everything written is legally binding and therefore if your boss tries to fire you, you will be quite within your legal rights to sue him/her.

      The sooner you get this done the better because if your employer is already harrassing you then you have an idea what he is trying to do which is of course get you to resign. I know how soul destroying it is to be constantly harrassed but please don't resign or say anything along those lines to your boss because he will just keep the pressure on.

      He obviously knows that he cannot legally fire you so you have the upper hand at the moment even though you don't feel like you have.

      Please get legal advise even if it is just to tell you of your rights. I'm sure you will be able to claim legal aid but if not there are hundreds of legal companies champing at the bit to take on work related problems. You can also tell your boss that any further letters he sends should be directed to your solicitor, once you have a solicitor who is willing to take on your problem. This should at least stop the harrassment. No one has the right to harrass another person no matter what the reason. I would even make your boss aware that you intend to cite him as being the reason for making your illness worse because of his harrassment. If you have any letters from your work that could prove harrassment then all the better. If not, then the next time you speak with your boss or anyone he has instructed to get in touch with you, don't start a conversation with them, tell them thay have to put everything in writing to you. Please make sure you do this from now on because they can easily say they spoke to you on the phone and they have witnesses in the office who heard the conversation whereas you have no one. Written material is always legally binding, so if you can get them to put things in writing you will no longer have to worry about what your boss may try to do.

      In the meantime get a letter off your GP ASAP regarding why you are unfit at present to work, copy the letter for your files and send the original by registered and signed for post. Always photocopy any correspondance to and from your work and keep it safe, you never know when and how it may be needed. The more paperwork you have the stronger the case in your favour.

      I have been down this road many times but luckily the mention of my fictitious solicitor always worked and I never needed to go any further.

      The CAB will help you to know your rights and what to do.

      As for caring for your parents, even though there is a care package in place I imagine it was done with you also being part of that care. If so then you need to contact your Mum's Social Worker and tell her the care package needs reviewed ASAP because you are very ill and cannot help any more. They should come out and do a reassessment. Just make sure you tell your parents to emphasise how difficult things are or how much worse they are now that you cannot help them. Try not to look on it as you letting your parents down. This is not what you are doing. You are unwell and you have to think about yourself for once. Do not tell them you are doing anything at all towards helping them or they will assume that you are still capable of looking after them. Just be brutely honest. No one will think any the worse of you. You just need to know how to get the system to work in your favour. I got my information from a friend of my daughter who is a Social worker and who told her to withdraw all her help to me so that I would then be seen as a crisis case and they would have to come and assess me.

      Again I hope I have been of some help. Just remember, any calls from your work, you don't talk to them except to say, "Please put it in writing" and that goes for anyone you think is your friend at work because bosses can be clever and think that employees will behave differently and talk freely to 'a friend'  so tread carefully.

      Big hugs of support,

      June x

       

    • rachael88657
      rachael88657 ailsa_june

      Posted

      June you are an angel! Regrettably this all happened in 2010/11 and I have not worked since apart from looking after my parents. I did seek legal advice and the first course of action was to see a barrister but that was way out of my financial league. I was not mentally fit enough to cope with courts etc and of course the sarcoid would probably have wiped me out. 

      Hind site is a wonderful thing but truly you are a very knowledgable lady and I wish I'd found you and this site before!

    • ailsa_june
      ailsa_june rachael88657

      Posted

      Thanks for your kind words Rachael. I wish I had been around when you need the help. You are like me in a way because I should have sued the hospital back in 2010 for negligance leading to me ending up in a wheelchair but like you I was suffering badly from Sarcoidosis and just couldn't muster the strength to do it. By the time I started to feel a bit better I was told it was too late to start a case as there is a 3 year limitation on starting proceedings. I felt so let down. It had taken me so long to even find someone willing to take on the NHS. With the law being different in Scotland, lawsuits are so hard to bring against doctors and hospitals. You see all the adverts on TV for companies who say 'no win, no fee' but it doesn't apply to Scotland unfortunately.

       I hope you can still get some help with your Mum and Dad. You shouldn't have to shoulder the responsibility on your own when you are so unwell. I'm a great believer in the saying, "If you don't ask you don't get" so even if they say no you won't be any worse off.

      Keep your chin up, Rachael

      June x

    • rachael88657
      rachael88657 ailsa_june

      Posted

      Bizarrely we have a review for Mum next week and Dads aids are also due to be checked/replaced. Dad also sees the holistic Dr again so we wait with baited breath on that one. My sarcoid has flared up again this week and in a way I hope it lasts until the end of next month when I get to see the ENT dept but Sod's law means it will probably be over the worst by then! Tried to deadhead my lavender today and had to keep stopping. Ridiculous isn't it but that's the nature of the beast. I will get it done if it takes all week I won't let it stop me gardening. Oh well onwards and upwards!
    • ailsa_june
      ailsa_june rachael88657

      Posted

      Good luck Rachael for the visit. Remember to tell them you are unable to help your parents due to your own illness. What ever you do don't say 'sometimes it's okay' because they will jump on the least little hint that you can do something for your parents. I know this will make you feel awful but you're not letting your parents down in any way you are just getting the much needed help you deserve. A little over-acting wouldn't go a miss either if you are having a better day but obviously if you are still having a bad time of it which I think will probably be the case then they will see how poorly you are.

      Leave the gardening etc until after their visit or you might be seen as having nothing wrong with you. I think it is very brave of you not to let the sarcoidosis spoil the things you enjoy but you need to 'hide' this for the moment or you will end up like me with no help.

      I don't understand why these people don't understand how people can have good and bad days and only take the bad days into consideration.

      Anyway, best of luck,

      all parts crossed wink

      June x

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