Stage 4 sarcoidios in tested my whole body

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I have stage 4 sarcoidios it has infested throughout my whole body. I've been on every kind of medicine nothing has worked found out I had sarcoidios when I was 17 now I'm almost 47 I recently moved to Ohio and went to the Cleveland clinic to see a sarcoidios specialist and he put me on methotrexate injection. Not sure if it's even going to work but I've spent more of my life in the hospital then at home . Now this specialist had told me and my sister there is nothing more they can for me but trying to try and give me some kind of quality of life. Not something anyone wants to hear. This was a pill I couldn't swallow. I have grand babies that will never get to know me and that's the hardest part of this illness I've had to figure out how to get through.

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5 Replies

  • Posted

    Hi gina.

    I know if I say sorry it won't help. Even if I said it a million times it still wouldn't help make you feel any better but only god knows the sadness and depression I feel deep inside when I read posts like yours. But all I want to say is that no body knows the unknown. Even if this god damn illness has spread throughout your body it may not mean the end. I just hope and pray that they can do something for you. I really do.

    I don't come here much any more and I try not to but I hope you keep us updated.

    I heard good things about the Cleveland clinic. Good luck to you.

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  • Posted

    Go with the infusions they work

    My mom was on remicade for two years and had not one flair up they just took her off and boom she got sick again 

    Good luck 

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    • Posted

      Why did they take your mom off of the treatment if it was working for her. See this is the issue when a treatment works they want to either or change it or stop it. I wish you and your mom the best of luck. I will pray that she will get better may I ask what stage she is in. I'm a stage 4 .

      Gina

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  • Posted

    hi im 17 and have been diagnosed since i was 11. i had my first flair up when i was 3 can you give me any advice on trying to plan for the future maybe where i can go for help and what doctors to see. thank you  
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    • Posted

      Gabby

      I'm sorry you found out you had sarcoidios at a young age . I don't know what area or state your in to point you in a direction .. Cleveland clinic in Ohio.. Walter Reed Hospital... John Hopkins Hospital Both in MD and where is your sarcoidios I'm a stage 4 and all they can offer me is some kind of quality of life which isn't good enough for me I'm going to make a trip to Walter Reed/ John Hopkins for a 4th and 5 th opinion I will try to help you as best as I can 30 years worth of suffering from sarcoidios I've been through every trail... Tested on new drugs like a test rat. It's infested throughout my whole body only thing left is my brain stem and when that goes I'm done. I no longer produce tears cause it's in my eyes. So please if you have any questions please feel free to contact me. Prayers for you that they can get yours under control so you can live a long and healthy life. Please keep in touch

      Gina

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