So what happens next?

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Ello guys smile how are you all??

So a few questions for you if you dont mind.

Sarcoidosis can affect aywhere in the body? But how do they know where its affected and where it could affect? Do all people with swollen glands in there lungs need steroids... seriously i have put on enough weight since having my baby haha! Lastly headaches headaches headaches drive me crazy nearly have them all the time? Does anyone else have this? Actually one more question fatigue feeling tired all the time. What is this about? Seriously does it go away? Or am i always going to feel tired aha hope your alll well. Or well as can be expected for you to be on this site lol xx

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  • Posted

    Hi Katld,

    Sorry to hear you are feeling so bad. From my knowledge and experience with this condition, they can do a PET scan which is an all over body scan. You are injected with radioactive glucose and they scan you and sarcoidosis shows up red on the scan wherever it is. Now you are radioactive for 8 hours afterwards and should not go near babies, kids anyone really. Also depending on where you have it, blood tests can indicate sarcoidosis, biopsies of the glands can show it too.

    The weight issue is a problem for all steroid users. You just need to think that they are not permanent and the weight will come off after. Just watch your diet and exercise if you're able. Steroids are effective for a lot of people but not for others. Your doctor may have to look at your treatment options to see what suits you. Some sufferers don't need steroids at all. Sometimes sarcoidosis just burns itself out or goes into a remission. Everyone is different really. Hope this helps in some way.

    Regards,

    Polly.

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  • Posted

    Hi Katld,

    Ok so they can locate sarcoidosis by doing xrays,ct scans, biopsys, mri's they can even tell if you have active sarcoidosis by taking blood.

    It can travel anywhere on any organ, on your skin, in your nose and eyes.

    I was put on steroids because it traveled to 3 different organs and my leg. Bit when I had it on my ungs in 2010 I didn't have to be on them.

    Now tiredness is a huge part of it, trust me lol I could sleep for Ireland but I take different things to give me energy however caffeine is not one of them.

    Now headaches I didn't really start getting them until I was being weaned off my steroids but I get them bad now constantly but I have gone higher on my dose again and I will be going foe an mri just on a waiting list.

    Keep the faith tho trust me you begin to get used to it and if you do need to be put on steroids it's has its downfalls but they do work for the sarcoid

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    • Posted

      Ok so im really new to this site and still trying to figure it out. Its weird having to reply to each indvidual comment rather then as a group or maybe i have got that wrong lol so i understand that nothing unusual come up in my usual blood tests is that normal?? So do you have regular mri scans??? And how did you findout it travelled to your legs and other organs do you just generally wait for more symptoms to appear xx
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    • Posted

      Lol sorry about all the questions!!! X as you can dee i havent seen a specialist or even been told anything yet except from ive been diagnosed with it. And my surgon was a stand in surgon so he wasnt even the one that did my tests so he was literally reading fro my notes which is kind of annoying x
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    • Posted

      Hi,

      Yea as far as I know you write individually to each response.

      I haven't always had blood tests to diagnose it's just sometimes my doc may send me for them to see if it's active.

      I am having my first mri done in a while, my last ct was 5-6 months ago they don't do it all the time once they see it on the organ then they can judge how progressed it is and how long the dose should take to work.

      They knew it was on other organs because they did a ct, a stomach scan, xray and biopsies on me to identify where it was. However I found it on my leg it's like swollen lumps under my skin down my shin.

      I know how you feel with the tiredness I have a 14 month baby girl and I also work 20 hours a week, so sat and sun are my rest days kind of lol 😁 I sympathise with you because I understand the headaches I thought it was sinus at first however it's been 9 weeks solid now which is why the concern for the mri.

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    • Posted

      Awawww its such a lovley age. Where do you work of you dont ind me asking do you think it affects you work wise? Alot of people on here seem to sick to work and i really hope i dont become like that. I dont love my job. But i like working x
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    • Posted

      Hi,

      Yea she a dote and keeps me busy as you know yourself lol.

      I drive for my job an hour or so in the morning and two or so in the afternoon so it's not to strenuous, however I only went back to work after been out for two years ( minis a Lil stint I did in retail for four months but was not a good idea), tbh I love it its not to hard I did consult my doc and he said once it's not stressful and not ro hard then he said yes, but I had already made up my mind I just needed him to confirm it.

      I was at my gp yesterday I've had chest and body pains for 10 days I thought it was a chest infection 😞 but instead the sarcoid has flared up all over he also believes I have developed inflammatory disease, I had lots of blood done and having a chest xray today. But I'm still working away have to push on so hopefully nothing bad comes back. Fingers crossed 🍀

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    • Posted

      Well i hope its all good news. I have been having major pain in my right knee and i keep wondering if everythings connected to sarcoids lmaooo! Just come back frm a toddler & mummy dance class and im ready for bed let alone work haha!!! Fingers crossed for you hun x

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  • Posted

    Sorry forgot to say, the tiredness is nearly the worst thing about the condition but it did improve for me. I have more good days now than bad ones. Don't beat yourself up about feeling so bad thinking I should be able to do more but if you can't you just can't and tomorrow nay be a better day. You need to take it one day at a time.

    Polly

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    • Posted

      You know i dont feel so bad to be honest i do get tired very easy and struggle to focus its like my mind gets so tired that my memory is shocking but im feeling better in myself latley. Having a 2 year old keeps me active! Thats for sure being tired is not an option we go out daily and i work over 20 hours a week but on my days off i struggle to want to go out i only do it becauze my little girl needs the stimulation. Headaches are my main issue tbh iget 3 different types of headaches 2 of which i can deal with but there are certain headaches i wake up with that make me want to go straight back to sleep because i know how my day is going to plan out they are horrible!! But by the sounds of it i cant complain as mine seems well behaved at the moment!!! Thanks for the response those guys x
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    • Posted

      Its so hard with small kids, I have 2 my little girl is 2 and my little boy is 4. Its hard when you are tired because you want to do things with them and they are so energetic at that age you need to tire them out too but its difficult if you're having a bad day and you're tired. In a way it used to make me more tired. That probably sounds mental.

      I was eventually diagnosed myself through bronchoscope and biopsies. My doctor was thinking lymphoma also which was so scary and more so when you have a family. Since January I have had two cts with contrast. They don't like to do them too often because having one is like having 100 chest xrays. Which isn't good for the body. Take care and look after yourself and if you have good family support ask them to help you especially if you're having a bad day.

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    • Posted

      Are you from the uk? So im assuming sarcoidosis is not passed on to our kids am sure i read somewhere that its not connected. Yeah i know what you mean..my family are so far away so not an option but its ok we manage fine. Yeah i had a bron and another one mediscopy or something like tjat cant remeber what it was called mind you i was only diagnosed yesterday so still not sure what it means for me and my own case x
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    • Posted

      There are sarcoidosis specialists in Ireland. We don't have sarcoidosis clinics as such. I'm under the care of a respiratory consultant and I'm sure if the sarcoidosis was in other organs I would be under the care of those specialist area consultants. I am considering going to see a sarcoidosis specialist but I can't fault my present consultant. Where do you hail from?

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    • Posted

      Uk not too far away yeah i was being seen by the same but then they told me my diagnosis with a very pointless apointment then discharhed me saying they are referrinf me to a sarcoidosis clinic. I tryed looking it up online couldnt find anything though so not sure exactlt what or where it is yet lol x
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    • Posted

      Hi Amanda,

      I'm in Limerick and I attend consultant in Mallow, co. Cork. Hope you feeling better soon. I'm feeling a bit achy but my kids and hubby have colds taking my vitamin c and magnesium which seems to be keeping the cold at bay. So fingers crossed.

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    • Posted

      Hi polly

      Oh the colds are going around like wild fire, I hope you.dont catch it. Vit c is the best for that. I take them all every morning gives me energy too which is what we need.

      Wish you good health.

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