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Could they be looking for sarcoidosis?

Posted , 3 users are following.

cc051079
cc051079

Hi! I'm new to this and just have a few questions.

I'm a 37 year old female non smoker.

In Jan I had a few chest pains and felt a bit like anxiety we think off to a & E had chest xray e g all fine.

Went a couple more weeks had dizzy spells, nausea and lack of appetite. Off to a & E all bloods ok plus chest xray and ecg. Sent home with anti dizzy/sick pills.

2 weeks later I had a letter saying there was a shadow on my xray which they don't think is anything but to get it checked at thorasic.

Panic ensues! Still feeling poorly Dr's can't find details anything gets apart from raised temp (37.6 and 37.8).

Thorasic Dr thought all ok but would check with his team what they thought.

Letter back saying they want to ct scan chest/abdomin/pelvis. The pysiologists saw slight changes in my breathing tests and this could mean narrowing of pipes so a ct would be wise due to shadow and temp.

Sorry for long post but do you think they are looking for sarcoidosis?

I don't have typical symptoms but just don't know why they would be doing a big ct scan for lung shadow?

Hope you can help!

Claire

3 likes, 15 replies

15 Replies

  • gail_24648
    gail_24648 cc051079

    Posted

    Hi Claire, I am just going through tests to see if have sarcoidosis, I think they do ct scan etc as a matter of course now, I was told x ray's can show up things and then a ct scan can often show all is fine, this site is brilliant for advice, am sure you will be fine, keep me posted x

    • cc051079
      cc051079 gail_24648

      Posted

      Thanks Gail.

      I have my CT scan this Friday but follow up at the thorasic clinic on 26th April to discuss!

      It was just that they were scanning the whole torso not just the lungs which worried me.

      Reading through posts I wonder if I have sarcoidosis as I have aching joints, shoulders and the Dr last told me I have a urine infection!

      Claire

    • gail_24648
      gail_24648 cc051079

      Posted

      Hi Claire, this is all new to me too! I wonder if because you have aching joints that is why they are doing a more extensive ct scan, it's hard to understand this sarcoidosis, I too have never smoked, this has come from nowhere! I think we just have to go with it and see what they say and I know it's not easy, it's constantly on my mind, keep in touch, we can support each other x

    • cc051079
      cc051079 gail_24648

      Posted

      Thanks Gail.

      Always in the back of my mind too! Hoping I can get a cancellation appointment at the clinic so I don't have to wait till 27th April! X

      Keep in touch how you get on too. What symptoms have you had to be investigated for sarcoidosis?

    • gail_24648
      gail_24648 cc051079

      Posted

      Hi Claire, I had a routine chest xray which showed inflammation on my lungs, no symptoms apart from being breathless at times, I think I am paranoid now, waiting for a biopsy to clarify if is sarcoidosis, are you in the UK? X
    • cc051079
      cc051079 gail_24648

      Posted

      Yes I'm in the UK. Mine was a shadow rather than inflammation which is making me worried!

      1 day till ct!

    • gail_24648
      gail_24648 cc051079

      Posted

      Hi Claire, I Google everything and end up frightening myself! I always think I have the worst possible scenario, until we have these tests I don't think they know, they are 90 per cent sure I have sarcoidosis but I don't know what the other 10 per cent could be, it's so hard all of this, somehow we have to try and be positive! I am ok when am working it's when I can't sleep and it's all going through my head! Keep in touch, we can help each other x

    • cc051079
      cc051079 gail_24648

      Posted

      CT scan went OK. Nurse said roughly a week to wait for results but no appt till 27th April! Might have to ring the clinic and beg for a soon error appt or I think I'll worry myself too much! How are you? Any biopsy results?

    • gail_24648
      gail_24648 cc051079

      Posted

      Hi Claire glad ct scan went OK, if you ring them in a week and let them know how worried you are maybe they will give you an earlier appointment? Have got my biopsies this Wednesday, am worrying myself sick! I even thought about not having it done but I know I need to know what is going on, keep in touch!
    • gail_24648
      gail_24648 cc051079

      Posted

      Hi Claire just wondered if you had managed to get an earlier appointment, had my biopsies last Wednesday don't know how long for results!

    • cc051079
      cc051079 gail_24648

      Posted

      Hi Gail. Yes they wrote to me to change and it's now Monday! She said they booked the other appt before they knew my CT date and they like to see everyone within 2 weeks of their ct!

      Bit nervous! Hope you don't have to wait too long for your biopsy results x

    • gail_24648
      gail_24648 cc051079

      Posted

      Hi Claire, how did you get on yesterday, hope you are ok x
    • cc051079
      cc051079 gail_24648

      Posted

      Sorry Gail forgot to post! The scan showed it's a fat pocket! Releived but still don't feel right so back to gp!

      The only thing it found was a kidney stone! Hope you're OK x

  • terry39293
    terry39293 cc051079

    Posted

    I am no doctor but they may be looking for enlarged lymph nodes. this is a classic sign of sarcoids.
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