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Just diagnosed

Posted , 5 users are following.

michelle0510
michelle0510

I just been diagnosed with stage 3 sarcoidosis. Doctor started me on prednisone daily for 6-9 months. In the past year I have been on 40-100 mg on and off more on than not. No relief. I had no idea what this was and not idea I had it until my biopsy confirmed it last week. I'm extremely depressed I have a 6 year old son I'm raising by myself. My doctor is telling me that it's not a serious disease but after some research I disagree completely. I'm 34 yrs old. Having shortness of breath, coughing, severe stiffness and pain in my fingers and knees, wheezing, and chest pain. I could definitely use some help and knowledge. Should I get a new doctor or just wait 6 more months in hopes of some relief?? I'm desperate as I have been the past year struggling with all of the symptoms just to be told I have pneumonia and bronchitis. Only to finally bothering the doctors so much and getting a cat scan, pet scan, and finally a biopsy to confirm this new diagnosis of stage 3 sarcoidsis.

1 like, 4 replies

4 Replies

  • gina1970
    gina1970 michelle0510

    Posted

    Get a second opinion if your doctor ISN'T A SARCOIDIOS SPECIALIST then I would search for one near you. I'm a stage 4 sarcoidios I've been in a battle for 30 year's and well for some it goes away ( not completely) and then there's me who's whole body is infested with the sarcoidios. And I mean every part of my body. If you don't think your doctor is giving you the right treatment. Look for another one . I'm on methotrexate injections once a week and it's stopped my harsh coughing spells and I'm able to move around without the use of my wheelchair. Good luck I wish you the best

    Gina

  • scotty49092
    scotty49092 michelle0510

    Posted

    Don't stress! It makes it worse, your the same age as I was when I was diagnosed. It depressed me for years to the point I have no wife, no friends and family stays away from me. It took 10 years to put me all the way down to the point I could not work anymore. But I just try staying happy. Because I still can eat, laugh, smile and walk through all the pain, fatigue. Don't worry just live. FYI get off the prednisone as soon as possible. They are very bad.

  • gina1970
    gina1970 michelle0510

    Posted

    Scotty is right get off the predensone ASAP! It causes more damnage than good

    Gina

  • Thesufferer
    Thesufferer michelle0510

    Posted

    "My doctor is telling me that it's not a serious disease" !!! That's what one doctor told me too. These incompetent idiots. Any "doctor" who says this isn't a serious disease should be sent back to school for another 10 years so they might actually learn a thing or two about such illnesses. I'm not sure where these uneducated idiots get their information. How much suffering and how many deaths does an illness have to cause to be considered serious ? The lack of seriousness and actually the lack of knowledge on the part of most doctors when it comes to giving the right diagnosis is infuriating if it's not disgusting.

    Michelle, I don't know how long you've been having these chest pains but they might go away on their own. I too was having stabbing chest pains but they went away after some time (not taking any meds myself). However, I do have stiffness in my limbs and also pain in my knees and fingers and other parts but they're not terrible pains. Your depression is understandable. You're probably suffering from anxiety too and I want to tell you anxiety and stress WILL make this illness WORSE. I know this from experience. I wish I had something good to say but it seems that each patient with this curse (sarc) is different. Some will suffer greatly and some won't.

    Now, one of the biggest problems is where to find a doctor who actually knows about this disease. It's the same problem I'm having. Seriously, how do we find a doctor....and what if there isn't a doctor any where near where we are ?

    Sorry, I know this isn't comforting but there's really not much we could tell you as we're all in the same boat and no one seems to care to listen or give this god damn disease the attention it should get. Hell, even those who are closest to us seem to think this illness isn't something serious. It's so frustrating. 

    I just hope your case turns out to be one of the mild cases and hopefully even gets better on its own.

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