Ello guys 
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? Actualĺy 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
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.
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
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
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
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
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
Hi there, Iv asked my consultant the very same question this week, the short answer is they can't say for definite without biopsy on every part of your body,
Mine was discovered by accident on Xray after a car crash, at first they suspected Lymphoma because I had 28 lumps in my lungs, then I had a load of CT scans which didn't confirm anything so it was time for biopsy which proved to be Sarcoidosis.
I now have it on my skin, sinuses, lungs of course and bowels, I can imagine how how you feel knowing you have a disease but not knowing where it is in your body just take it day by day and don't panic, If you feel unwell or get new symptoms get checked over by your doctor.
Tiredness, sweating and no energy are all normal symptoms of Sarcoidosis.
Hope this helps and you start to feel better soon
Pete
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.
So can i ask how they found out where else it was??? If they found the the lung by accident how did they find out you had it in all different places? Sorry to hear that bdw hope your not feeling to unwell x
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
Amd thankyou for the response x
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.
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
Iv had the skin rash about 16 years and in my lungs about 10 but I only found out what the skin rash is very recently, It's called erythema nodosum, about 6 year's ago I started having really bad stomach pains and after about 5 admissions to hospital with suspected appendicites I insisted they remove them and yes you guessed it it came back about a month later so then they came up with crohns disease but never confirmed it a senior consultant said it's highly probable to be Sarcoidosis because of the pain I was in , he wanted to give me a endoscopy the next time it flared up but it hasn't come back since which is another pointer for Sarcoidosis.
As for my sinuses that's the most recently diagnosed bit to be confirmed by endoscopy.
Read up on the internet I found out alot from there
Oops nearly forgot I found out about Sarcoidosis mimicking crohns disease from the internet and just after that my bowel doc said the same thing but it hasn't come back since
I live in Ireland. Have they started you on treatment?
Nope not even sure if il need treatment i have only just been refered to the sarcoidosis clinic x
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?
Hi polly
I also live in Ireland and attend tallaght hospital are you the same?