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Sarcoidosis

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carla46710
carla46710

I was diagnosed in 2010 with Sarcoidosis by thorasic biopsy.  My life has continued to decline since.  I have a host of other ailments as well.  Of late I have been running a low grade fever, nasal congestion, fatigue to the max.  My feet feel like I have needles and somewhat numb at the same time.  I just read a post from another in this discussion.  He expressed frustration in getting Doctors in the UK to take this disease seriously.  My friend we experience the same here in the US.  As he clearly indicated medical professionals don't want to assume the responsiblity of treating patient symptoms as we know they can't Cure the disease.  I am going for some bloodwork on Monday.  I do plan to contact Washington University in St Louis Missouri, reknown for medical research and training.  

0 likes, 10 replies

10 Replies

  • magdafloasiu
    magdafloasiu carla46710

    Posted

    Hi Carla,

    nasal congestion, low-grade fever and fatigue are all "normal" symptoms when sarcoidosis is active. I had all these in addition to insomnia and throat problems  a few months back. My doctor put me on anti-inflammatory medication (prednisolone) ; I feel much better now. no more low-grade fever (very rarely, only when I work too much), nasal congestion reduced to a minimum, and no more fatigue; furthermore, I sleep like a baby, which is great - I finally feel rested again...

    I think that no doctors take this disease seriously, regardless of where we live. whenever i talk to my doctor and complain about some symptoms, she smiles at me, saying "well, this is how this disease is. We cannot do anything about it. It can be worse" this is how she encourages me. smile

    All the best,

    Magda

     

    • carla46710
      carla46710 magdafloasiu

      Posted

      Totally understand.  You want to scream - No it's only this way because professionals choose to ignore.  

      My doctors here are very reluctant to use prednizone.  In the 5 years I've had this disease, I have had 2 ten day courses of the med.  

      Regards

      Carla

  • Squarky
    Squarky carla46710

    Posted

    Hi Carla

    you mention throat problems could you explain yours as I have been having a problem with a feeling of tightness but with a mucus build up and the only thing that sorts it out is prednisolone, my doctor keeps telling me it can't be my throat it must be my chest or lungs....yet my chest always feels clear when I get like this......cheers

    • carla46710
      carla46710 Squarky

      Posted

      Yes my chest feels clear as well.  However, I have a heavy weight when i breathe that seems to induce the cough.  My throat seems to get scratchy when the cough is persistant.

      Regards

    • carla46710
      carla46710

      Posted

      I often have difficulty swallowing.  For example when I take my medication.  It gets stuck and takes me about a half hour to get it clear.  
  • Squarky
    Squarky carla46710

    Posted

    Hi Carla sorry I ment to send the last post to madgdafloaslu.....but I was diagnosed with skin sarcoid in2001 after having a lump taken from my arm and having a red rash on my legs.....I get boughts of nasal congestion yet E N T put it down to chronic rhinitis also a lot of fatigue.....I take a lot of prednisolone which help with inflamation....I also get a lot of dry eye symptoms and a really dry throat....the worst thing is symptoms pop up all the time.....my recent one had been a few lumps on my legs but one is on the bend of my knee and really sore.....I have an immunology app in February 15........goodluck with yours😊
    • magdafloasiu
      magdafloasiu Squarky

      Posted

      hi squarky,

      maybe - just maybe - you don't respond to medication too well. as far as I know, not all patients respond to prednisolone(about 25%, if I remember correctly). I am one of the lucky ones; usually, after I take prednisolone for a while (3-6 months - it all depends on how I feel during the treatment) I feel ok for 2-3 years; then, all symptoms come back, lessions appear again in my lungs, and I have to retake the same treatment. Probably, it's related to immunity...I don't know, but it's quite annoying...

      Magda

    • carla46710
      carla46710 magdafloasiu

      Posted

      The longest period of time they have put me on prednisone is 2 weeks.  Strange.
  • john10431
    john10431 carla46710

    Posted

    Hi y'all - I was diagnosed w Sarcoid in my chest in 2008. Shortly after, it went dormant, but I began to get symproms in 2013. The Sarcoid had left my heart and lungs and set up camp in my liver and spleen. While in my chest, it had fouled up the timing in my heart, so now I have electronic ignition (pacemaker). 

    I have one 1/4 in. spherical thingies in easc of my spleen and liver. Neither has increased in size in over a year. When my Sarcoid flares up, I have an elevated calcium level, which triggers severe depression. A year ago, my Internist ordered a blood infusion, which was helpful.

    Carla, you mentioned a "needles" feeling in your feet? Recently, I experienced that in my hands. It felt a little like they were "asleep," but the needles part was unique. At the same time, my face got EXTREMELY hot. Never had it feel so hot. I lay down for 20 min., and both symptoms went away. Has anyone else had that experience? - John

    • carla46710
      carla46710 john10431

      Posted

      Mine is primarily in my feet.  I have sharp shooting pain in my hands around the thumb that shoot up almost to my elbow.  This disease is a real pain!
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