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Living with Sarcoidosis

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Sarcoidosis


by: Omar on Fri, Jul 13 2007

I’m a 56 year old male and I was diagnosed with neurosarcoidosis in 1986 following a nocturnal seizure I was put on steroids. My doctor said that steroids can cause blindness but the low dosage I was on should be OK. 15 years later I had a shunt because of normal pressure hydrocephalus a potential outcome from neurosarcoid. Got on with living then again 3rd time? unlucky had signs of pulmonary sarcoid. In between I lost my driving license because of blindness. I was put on prednisone following pulmonary involvement. Realizing I risk of osteoporosis while taking steroids 50mg daily advised to take vitamin D. The problem with taking vitamin D it promotes the granulomas. Have decided to stop prednisone as my vision has worsened!. I’m 1 in 60 out of 100,000. which means it is not financially viable for the drug companies to find a cure.

Comment on this

Comments
  1. Mon, Sep 10 2007
    I have pasted something I read on the information posted at left about Sarcoidosis Treatment which says; Quote Patients with sarcoidosis are especi...Read

July 2007

  • sarcoidosis - by Dianne - (Sun, Jul 29 2007)
    I have recently been diagnosed with sarcoidosis after suffering for a long term with breathlessness. No one listened to me until an x ray showed what it was. [more..]
  • sarcoidosis - by yavonne - (Wed, Jul 25 2007)
    My husband was diagnosed with sarcoidosis on 2/1/2006 after being exposed to concrete and its additives. He has seen a rhumatologist [rheumatologist],cardiologist,pulmanologist [pulmonologist],thoracic doctor and his family physician. His symptoms went away for about 4 months and then came back. [more..]
  • sarcoidosis (spelled it right :)) - by Stephen - (Tue, Jul 17 2007)
    I was diagnosed with sarcoidosis ~5 years ago. I had a biopsy performed on tissue after having a nose surgery to help with sinus and breathing problems (Hindsight 20/20 probably related to the sarcoidosis). [more..]
  • Sarcoidosis - by Omar - (Fri, Jul 13 2007)
    I’m a 56 year old male and I was diagnosed with neurosarcoidosis in 1986 following a nocturnal seizure I was put on steroids. My doctor said that steroids can cause blindness but the low dosage I was on should be OK. [more..]
  • Sarcoidosis - by Marty R - (Tue, Jul 10 2007)
    My husband is 56 years old and was diagnosed with sarcoid 8yrs ago, and it went into remission, about 3 yrs after, but came back worse than ever. [more..]
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