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Sarcoidosis & I'm scared

Posted , 7 users are following.

caz62230
caz62230

I had the cough a year ago & went to the docs who sent me for an x ray which led to a CT which led to pulmonary sarc - I have it in my lymphs & lungs.  

I work in sales & I have 2 little boys.

my breathlessness comes & goes , good days & bad.  But my condition peaks & troughs.

I had a flare up of rib pain over Xmas which went within a month with anti immflamatories.

since September I have had calf pain & recently pain in the tops of my legs.

its freaking me out, I don't take anything for my sarc.

Docs don't know about the condition & three months between consults is a long time if things change.

has anyone else had the leg pain? I'm hoping it will just go eventually.

i don't let this get me down outwardly but inside I'm petrified - no one really understands & when you talk of your symptoms you just sound like a hypercondriact.  I know what I feel ... It's just worrying I guess 

be happy to share discussions with people who know what I'm feeling.cool

2 likes, 19 replies

19 Replies

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  • Tazchurch
    Tazchurch caz62230

    Posted

    My sister had the same as you seem to have. At one point she could not walk across a room without stopping to catch her breath but is now completely clear, with her they gave her no treatment to begin with but she failed to get better and was put on steroids for 7yrs, many cases though self resolve.

    I will ask her about leg pain in the morning and get back to you.

    The American Lung Foundation website is helpful and I can find their address if you want it. There is also an American site for sarcoidosis sufferers.

    • caz62230
      caz62230 Tazchurch

      Posted

      Thanks that's really helpful

      Did your sister say about the leg pain?

      My twin sister currently had eye probs & so I've told her to get it chkd got sarc

    • Tazchurch
      Tazchurch caz62230

      Posted

      She did have leg pain with stiffness and tells me sarcoidosis can cause eye problems so your sister does need a check
  • kimberly55282
    kimberly55282 caz62230

    Posted

    I have been finding these forums but try are all from a year ago or more are there knew ones you are in. And how are you doing?
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