Hi , scan!!

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Hello all. Thsnks for reading . Bit of advice. Has anyone found they have Sarcoid by accident in a scan ?.i had cancer (testicular) 11 years ago and after an MRI scan to see if I have a slipped disc they found enlarged group of preortic lympth nones behind my stomach in the left.so with my history they sent me to cancer doc in a panic, he thinks it's a cancer and not related to my cancer of ten years ago. Having looked online I seem to have for many years some symptoms , red watery eyes, phlem cough in mornings , few joint pains and now and then sinus pain. Tiredness . Maybe I am clutching at straws but i would just like any info?? . If lympth nides are raised in tummy area does that mean I should not get the eye phlem symptoms? Would it effect my tummy? The lympth nides are not near my eyes if you get me?

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  • Posted

    Hi phillymoggs,

    sarcoidosis is a multi-systemic condition, which can be mistaken (quite easily, sometimes) for many other conditions. Sarcoidosis-specific nodules can be confused with benign or malignant tumors. additionally, some tests used to diagnose cancer can be elevated in sarcoidosis, which may result in a "false" positive. For instance, lung sarcoidosis can "mimic" lung cancer and nodular TB, and peritoneal sarcoidosis may "mimic" ovarian carcinoma. You can check all these facts over the Internet; but look to high-authority sources, such as gov sites, medical resources.... Many people have been diagnosed with a different condition, though they were suffering from sarcoidosis. As an example, I was first diagnosed with idiopathic fibrosis; my doctors realised that I was suffering from sarcoidosis after about 6 years...Additionally, I developed nodular TB (the nodules are the same with the nodules than form in sarcoidosis). My doc didn't know that I was infected with TB until one nodule broke..

    Now, as far as I know:

    - red eyes with exessive tearing from time to time may be a sign of sarcoidosis (sarcoidosis causes the so-called dry-eye syndrome);

    - cough with phlegm can be a sign of lung sarcoidosis;

    - joint pain is another sign of sarcoidosis;

    - sinus pain can also be a sign of sarcoidosis;

    - tiredness appears in most conditions, from flu to cancer, so it should not be considered...although, it is annoying...

    I'm not sure how enlarged lymph nodes in the abdomen will affect your stomach and digestive tract. Only a specialist can tell you this. Additionally, you may have lymph nodes in different parts of the body. When they develop in lungs, they may cause coughing and phlegm...

    However, it depends on how much sarcoidosis has spread in your body...

    In my case, sarcoidosis has affected especially my lungs (my lung capacity is about 50%), throat (pain), sinuses (running nose all the time, though I'm not allergic to anything), and eyes (I've developed corneal inflammation in the left eye and cataract in the right eye).

    One more thing: I'm not a doctor. So, you should see your doctor and tell him/her about the symptoms you've had for years...Another good idea would be to ask for a second opinion...sometimes, a doctor may stick to one idea, which is not always a good thing...

    Good luck!

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  • Posted

    Hi

    I had felt 'unwell' for a few months. Defining unwell isnt that easy. Tired, just run down and I put it down to heavy stress at work, woring 25 hours a day 8 days a week etc, time of year etc. I scratched my legs after taking my boots off, for comfort really (yes it sounds bizarre). This led to spots and severe pain. Went to see my GP who said I'd shaved my legs and got a shaving rash. They were so swollen and so very painful i couldnt weight bare, cut a long story short I was admitted to hospital for IV antibiotics for cellulitis. On hospital entry I went to infectious diseases for the treatment and it was standard to give all inpatients a chest xry and blood test from Aids through to anything and everything. It was the xray that brought up the 'abnormalities in my chest' which they thought were TB.

    It went on to become 4 infections, life in the balance and talks of amputating my legs, but that didnt happen. After a EBOS and bronchoscopy bt respitirtory symptoms worsened. 

    Looking back over time, yes all the signs were there. I had a skin problem on my face which the Dr thought was Malasma. My optician referred me to the hospital and GP as she thought I was asthmatic. I was treated for asthma but nothing worked. I'd lost about 3 stone but needed to and put it down to changing diet. My hair had falen out and nails broke but was stress. I wheezed like an 80 a day smoker if I went out in cold air, but that was asthma. But it was all sarcoid and had bone on for about 6/7 years.

    I think my body was saying look I warned you and warned you and you havent noticed so Im going to make you notice. They still didnt get to Sarcoid until TB and lymphoma was ruled out

    So Yes an xray for something else did fall upon it and yes looking back with the best sight in the world, hindsight, it was all there

    Hope it helps to know youre not the only onecheesygrin

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  • Posted

    something I forgot to say...

    Sarcoid presents differently in everyone and although it maybe in active you can have the symptoms for years after. There isnt a hard and set rule with this condition. Im not diagnosed with Sarcoid in my eyes or skin but they are affected by it. 

    Im not sure if youre thinking you may have Sarcoid or you are diagnosed but do get professional medical advice

    I was lucky, My Consultant is a Professor of respiritory medicine and had a favour for Sarcoid

    I would also add that look at the symptoms you have. Look at any medications you have and try to work out what is caused by condition and what is caused by medication. Not easy but be aware of the changes in you and your body no matter how small and tell the Dr when you see them. Its worth writing down each day and take notice of any patterns emerging

    Best wishes 

    Nicola

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  • Posted

    Ive re-read your post

    My tummy is effected even though mine is in my lymph nodes and lungs. My joints are affected. Be aware that when Sarcoid tiredness is discussed its a bland statement for the reality of it. Its a tiredness and exhaustion you can truly descibe unless youve experienced it. Like Magdafloasiu says, get the Dr to diagnose properly, get a 2nd/ 3rd opinion of you can or youre not convinced. Sacoid doesnt have a set pattern 

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  • Posted

    Thank you all for your kindness , I have a biopsy next week I think so that should find out what's what. Not sure how thru will get in there ha ha, thanks will keep you all updated
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  • Posted

    all the best with the scan/biopsy. Next week is ages when you want to know right now but its too soon incase they find something you dont want them to. And till then its all consuming. I believe knowledge is power. Once you have a concrete diagnosis you know where to go from there

    Fingers crossed 

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  • Posted

    Hi Phillymoggs

    My condiction was diagnosesd as asbestosis until a biopsy.

    Your syptoms sound like sarcoid but your tests will tell all.

    Good luck.

    Regard

    Tangles

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