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little scared

Posted , 7 users are following.

julie1173
julie1173

Hi,

After having a persistant cough for over twelve months, to the point where i couldnt finish a sentence without coughing, 3 lots of antibiotics and a course of steriods i finally got sent for a chest x-ray. within 2 hours of this i got a call from the clinic to provide samples, and i was seen by the consultant in the same week. They suspected TB or sarcoidosis.

I am now three weeks later after a CT scan, in the diagnosis stage of sarcoidosis. I spoke to my consultant today who said from my Ct scan and blood results , that it is definetly pointing towards this. I have now got to have a bronchioscopy, a ultra sound on my liver, and an appointment with a specialist. I am always wheezy, and everything seems such an effort. I already have hyperthyroidism, and depression and im just worried and very scared of what the future may hold. :-(

Any advice would be greatly appreciated.

Thank you

0 likes, 26 replies

26 Replies

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  • morag7
    morag7 julie1173

    Posted

    Hi Julie

    I'm not a doctor but it sounds like sarcoidosis to me as well. Its not as scary as it sounds though. Once you have a diagnosis then they can start talking treatment. The most common ways to treat sarcoidosis are with steroids (prednisolone by mouth) or other drugs if there are particular areas that its affecting and there's a potential treatment. Tends to be treat the symptoms because nobody knows exactly what causes it. Its the waiting to here anything I think is the worst. 

    I'm not a big fan of ultrasound but that's because I'm messy enough at the best of times not because its anything to worry about. If anyone can explain how I got the gel stuff on my nose when the ultrasound was in the area around my kidneys I'd love to hear it. 

    Try not to worry about it too much easier said than done I know. 

    Morag

    • julie1173
      julie1173 morag7

      Posted

      Hi Morag,

      I will try not to worry to much, its just the waiting now. Thank you for your reply, but im not sure i can answer how you got the gel on your nose lol. Take care

      julie

  • linda39
    linda39 julie1173

    Posted

    Hi,

    Hopefully I can put your mind at ease a little.

    I was in the same situation as you with the cough it just kept coming back after antibiotics.

    I started with a chest xray in October 2012, then with various hospital clinic appointments.

    Every organ of my body was scanned - all to no avail.

    Several chest xrays, and a CT scan

    I had a bronchioscopy in March 2013.

    A mediathanoscopy in April 2013

    I started TB treatement in May 2103 - on the interim of lab results - had to wait for them to grown.

    After 3 months it was finally agreed it was not TB, and I was discharged from that clinic to a chest physician.

    Last year was awful for me as I was constantly at appointments and felt so lifeless, and basically was out of bounds for about 3 months.

    I thought I was never going to get better.

    This year is a lot brighter, I stated on medication [Hydrocloxerquine] 3 months ago - which appears to be helping.  I have to have monthly blood test whilst on this.

    A couple of times my rheumatologist suggested a course of steroids, but my chest / Sarcoid consultant kept dismissing it.

    Sarcoid can affect all of us slightlyy different, and once you are on the correct path things should be a little more clearer for you and then you are able to manage things better.

    This disease is far more active in people than we all realise until we have it ourselves, then you will find you hear about it so much more.

    Let me know how things progress

    Take Care. Linda

     

    • julie1173
      julie1173 linda39

      Posted

      Hi LInda,

      Thank you for your reply,

      Its amazing reading how many people suffer with this. I hadn't even heard of it until 3 weeks ago, and now its all i think about. Thank you for sharing you experiences with me and im glad things are brighter for you, which gives me hope.

      I will lets you know how things progress.

      Take care

      Julie

  • robert22898
    robert22898 julie1173

    Posted

    Hi Julie1173, I have been dealing with Sarcoidosis since 2003, the fact that it can attack you in so many areas of your body, everyone's case is different.  My symptoms generally only effect my lungs, I have not had any problems with anything other than lungs since being pronounced with the disease.  But for the flip side as I stated, everyones case is different my Sarcoi comes and goes as it pleases, but I deal with it, at first in the beggining I was given prednisone for treatment, but after a while I no longer wanted to take the med because of the amount of weight I would gain for eating so much.  But I'm fine and just dealing with it until  they come up with a cure
    • julie1173
      julie1173 robert22898

      Posted

      Hi Robert,

      Thank you for your reply,

      just got to wait for diagnosis now, then deal with things as they come. Its just alot to take in.

      Take care

      julie

  • hayley2012
    hayley2012 julie1173

    Posted

    Hi Julie,

    this is the same as me, I had a cough for over a year and the GP kept telling me nothing was wrong, I demanded an X-ray and within 48 hours I had a scan and saw a  TB consultant, after more scans it was a questionable sarcoidosis, had a lung biopsy 2weeks ago and I'm back in clinic tomorrow for my results, same as you I had never heard of this lung disease and I'm very worried

    • julie1173
      julie1173 hayley2012

      Posted

      Hi Hayley,

      I hope all goes well for you tomorrow. Our stories sound identical, like you things have happened so quickly since the x-ray and it is very worrying.

      Please let me know how you get along.

      Take care

      Julie

  • linda39
    linda39 julie1173

    Posted

    All I can say to you all is I understand how worrying this stage is.  It's the not knowing. Then when things move quickly alarm bells ring

    But please rest assured you are very lucky to get a speedy diagnosis this is far better than the waiting game

    You will look back and say phew hopefully

  • rachael88657
    rachael88657 julie1173

    Posted

    Hi Julie,

    i remember so vividly waiting for a diagnosis, knowing that I wasn't well & my GP signing me off for months! The relief tho when they eventually told me it was sarcoid was like a huge weight being lifted. I thought at times I was going round the bend. 

    This site has been hugely helpful as it's comforting to know you are not alone and the morale support goes a long way if you have a bad day!

    Hang on in there

    • julie1173
      julie1173 rachael88657

      Posted

      Hi Rachael,

      Its the waiting that drives you mad, just want to know what it is now.

      Thanks for the reply and i'll try to hang on in there lol

       

  • hayley2012
    hayley2012 julie1173

    Posted

    Hi guys,

    got my results today and it is sarcoidosis, the relief to finally know is emense, I will be on medication for a few years and under the proffesor at my hospital regular chest x rays and assessments 

    • linda39
      linda39 hayley2012

      Posted

      Brilliant what a relief for you

      Have you been told what medication you will be on?

    • julie1173
      julie1173 hayley2012

      Posted

      Hi,

      Thats a relief to find out, now you can start your medication.

      Take care. hope all goes well

    • hayley2012
      hayley2012 linda39

      Posted

      At the moment it is steroid inhalers until I have an appointment with the proffesor at the hospital then I will be on steroid tablets for the forseable future as my sacoid has spread 
    • morag7
      morag7 hayley2012

      Posted

      The foreseeable future may not be as long as you think. Thats what I was told with steroid tablets though I never got an inhaler. But some people find that a dose of 20-30 mg is enough to stop it in its tracks, which was what I found. So I was only on them for about 8 months. Or it might be a high dose to begin with then a maintenance dose as low as they can manage to keep the sarcoid at bay without it starting up again. 

      At least you have a treatment plan which is always good

    • linda39
      linda39 hayley2012

      Posted

      So glad to hear they are taking car of you, also not jumping in with medication!!!

    • hayley2012
      hayley2012 morag7

      Posted

      Thank you morag7 I feel like I'm on the right road now after a long process 
    • hayley2012
      hayley2012 linda39

      Posted

      Me too linda39 I feel trying the high inhalers is better to begin with and with regular chest X-rays they will be able to control it better 
    • ailsa_june
      ailsa_june hayley2012

      Posted

      Hi Hayley,

      I'm glad to hear that you got a concrete diagnoses. It will have taken the stress out of not knowing. I'm also glad to see that you will be under the care of a good professional rather than being shunted from pillar to post. As Morag said dosages of steroids vary from patient to patient depending on how badly affected your lungs are with the sarcoidosis. I was initially started on 60mg daily but unfortuately the side effects were too great at that dosage for me to handle so the amount was reduced. No one knows how long their sarcoidosis will last unfortunately. It's a bit like asking how long a piece of string is. A lot of consultants put the length of time at 3 years. I don't know what their reason is for saying it will burn out after 3 years but my advice is to just take each day as it comes. Follow your professor's guidance and don't be afraid to ask any questions if you are not sure about something. Worry and stress are bad for sarcoid sufferers so take it easy. You could be one of the lucky ones and respond to treatment quickly or it might take longer. Either way there is no point in worrying about it as worrying won't make you well any sooner. Don't forget to tell your professor of any changes to you health, good or bad and remember to tell him if you notice any new symptoms as this will help him decide on a plan of action. Best of luck

      Kindest regards,

      June

    • hayley2012
      hayley2012 ailsa_june

      Posted

      Thank you June

      this has made me feel a little better, it's scary as no one really knows about it and it's hard to explain to family members etc

      hopefuly I will respond well and if not I know I'm in the best care

      thanks again 

      Hayley x

    • linda39
      linda39 hayley2012

      Posted

      It never fails when you tell people you have got Sarcoid, they all say....what on earth is that - say it again.

      I found the best way to get my family to understand was telling them to look it up and I read some of the postings on the forum to them.

       

    • ailsa_june
      ailsa_june linda39

      Posted

      I totally agree with you Linda, but I think they should look up all the posts everyone with sarcoidosis has written about because I've found that there are far more symptoms being discovered than ever has been reported on when you read the straight forward discriptions about Sarcoidosis.. I believe the symptoms to be related to Sarcoidosis and not a possible other ailment, because most of the sufferers have acknowledged having the same symptoms from extreme to minor cases. There is not enough research being done on Sarcoidosis and definitely not enough written about it. I firmly believe it is more common than the boffins think. You only have to count how many people there are on the different forums who have sarcoidosis to know the figures don't tally. I think in the last year or so all you guys have done more in the way of research and support than any medical group and we didn't spend one penny doing it. It's a crying shame that the medics don't pick up on sites like this as perhaps they would find it easier to diagnose sarcoidosis  and to treat their patients with the best medication because we have already tried the different drugs they have prescribed and know what works and what doesn't. It's not the sarcoid but the damn symptoms that need treating. For example; The chronic joint pain we have to suffer but a lot of us know that hydroxychloroquine works and eases the pain. The chronic sore mouths we have learned to treat ourselves. We know what eases this and share our findings with other sufferers. The rashes, the sore eyes, the nerve problems, restless and sleepless night, night sweats. I could go on and on but all you guys know exactly what I'm talking about. I'm on my soapbox again but I don't care. The more people know about sarcoidosis the more chance we have of getting much needed reseach. I honestly wish that reading about it would broaden people's minds but sadly it comes down to people saying - "I can't see it so you can't be suffering that much".It also seems to be that if it is not a very well known disease then again it can't be that big a deal. I hope everyones family and close friends give the support and understanding you all need.

      Okay I'm off my soapbox now

      Love and hugs

      June xoxoxo

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