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Is it Sarcoidosis or something worse. Affecting the brain and piturity gland

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bill40841
bill40841

My wife has been ill for a few months now. Almost a year. Started with headaches and facial ticks. The doctors have taken MRI and CT scans and can see matter in the scan around the skull. They ruled out lymphoma and are saying it could be Sarcoidosis. She is always tired. In alot of pain headaches and facial ticms. The next step would be to get a biopsy to confirm but that would involved messing with the brain star to confirm what they think they already know. Anyone have similar experience in the UK? How do you get the diagnosis right? So many concerns and worries. The forum is helpful. Sorry if I put this in the wrong place

0 likes, 6 replies

6 Replies

  • LeShawn
    LeShawn bill40841

    Posted

    I feel your frustration! I started with a swollen lymph node, large enough to warrant a needle biopsy.. Cancer ruled out, my Doctor didn't feel the need to look further. Moving forward 2 years my lymph nodes started swelling, face swelling, fatigue comes with this. 1 more year, sight gets blurry, lost sense of taste...2 years still fatigued. Other lymph nodes swelling plus all other symptoms..another needle biopsy and a Parotidectomy to remove my parotid gland, done because they thought Sarcoidosis...It wasn't it is IgG4 Disease, Rheumatologist diagnosed me. It was a hard road..but stand your ground. I knew something was wrong, but the symptoms were chameleon like so kept being looked at separately instead of together. https://en.m.wikipedia.org/wiki/IgG4-related_disease

    I hope this helps you. She ia lucky to have you.

    • bill40841
      bill40841 LeShawn

      Posted

      Thanks Leshawn. Glad you got to the bottom of it. It seems like an easy call to say Sarcoidosis with no real evidence or biopsy. But the course of treatment even with IG4 seems like it needs to be steroids anyway. So makes sense to just take them and hope for remission. Is that the course of treatment you were given? Light and well wishes.
    • LeShawn
      LeShawn bill40841

      Posted

      Initially yes, to get it under control. Then I started infusions of Rituximad, which works well, was able to come off the steroids. The steriods have so many serious side affects, and you have to administer it daily. Rituxmad has its side affects of course like meds, but this one for me was less of two evils ( so to speak)
  • camey03589
    camey03589 bill40841

    Posted

    Sorry to hear, I was diagnosed in 2011 I realize now I had it in 2007, the fatigue is very real! Bless her heart! Do what you can to destress both of your lives. I live in Texas I have been to the Mayo Clinic I am fortunate to have a wonderful family and friend support system I take the aggressive approach but save prednisone and steroids for flare ups I have a introveneous port which I take Remicade which is a “chemo” type drug. It along with methotrexate has my disease at bay but if I have to skip a treatment I’m behind the 8 ball, I am also diabetic type one or juvenile so it’s tough to manage but I’m fortunate it is not in my heart or brain it is in my lymph system and nervous system please let me know how I can help.
    • bill40841
      bill40841 camey03589

      Posted

      Thank you for taking the time out to respond. Appreciate your kind words. So this has been going on for 10-11 years at the same level of intensity? Have you been able to work or live a somewhat normal life. We are still both in our 20s. So just wondering how she will get on. I hear remission is likely. But now started the high dose of prednisone and see how she gets on. Any advice for sterios side effects.
    • camey03589
      camey03589 bill40841

      Posted

      I’m very straight forward so; here goes. I’m now 54, I was 46 when I was diagnosed I realize I had it for a few years. I was in renal failure when they finally were able to diagnose. Yes, I have a fairly normal life now that I’m stable. I have blood work once a month a 3 hour infusion one a month, pain management once a month, pulmonary every 3 months, eye check every 6 months. I haven’t worked since 2011, because I was a legal secretary working 50 plus hours a week. I do not have to as I retired early, I have developed RA as well, I don’t know if I could work, but I’m sure many do, I am in ministry full time from home, home school my 13 year old, and took care of my parents until 2 years ago when my mother passed. Faith is important to me, so besides that my husband and families support is paramount. I believe I’ve had it since my 20’s but didn’t know. I have had a very full life. I’m sure you all can to. God speed.
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