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kastou

639d

hi! I just got diagnosed with neurosarcoidosis and I'm trying find out what to expect with the process of the disease.

Top reply
    • SammyD

      523d

      Sarcoidosis is an INFLAMMATORY Immune System Disease. Your immune system protects your entire body. Wherever your immune affects, so can Sarcoidosis. Neuro is nerves, Pulmonary is lungs, Cardio is heart, Cutaneous is skin and so on. Having Sarcoidosis rear it's ugly head in only one area such as your nervous system, doesn't mean it's not in your whole body, only that the disease is currently focused there. The people I know who suffer from Neuro all seem to have balance and weakness issues. Walking, gripping, brain fog...those seem to be their number one issues. I currently am not suffering from Neuro issues. Although mine is referred to as "Systemic", because biopsies have shown it to be affecting my lungs, liver, skin, and heart, I haven't had any Neuro symptoms. I wish you the very best with handling it.

    • SammyD

      523d

      Sarcoidosis is an INFLAMMATORY Immune System Disease. Your immune system protects your entire body. Wherever your immune affects, so can Sarcoidosis. Neuro is nerves, Pulmonary is lungs, Cardio is heart, Cutaneous is skin and so on. Having Sarcoidosis rear it's ugly head in only one area such as your nervous system, doesn't mean it's not in your whole body, only that the disease is currently focused there. The people I know who suffer from Neuro all seem to have balance and weakness issues. Walking, gripping, brain fog...those seem to be their number one issues. I currently am not suffering from Neuro issues. Although mine is referred to as "Systemic", because biopsies have shown it to be affecting my lungs, liver, skin, and heart, I haven't had any Neuro symptoms. I wish you the very best with handling it.

    • kastou

      639d

      I meant to say infliximab infusion

    • kastou

      639d

      thank you so much for the reply. I have a pulmonary sarcoidosis also found in my left lung and my spinal cord is swollen which is making my lower extremities numbs. I'm seeing so many doctors that I can't keep up anymore. I'm on methotrexate and taking infliximab infused every 2 weeks. I'm so confused 😕. Thank you

    • Coffee_hound

      639d

      I have pulmonary sarcoidosis, Neuro sarcoidosis I am not familiar with. Same disease, different area? I also have Crohn’s Disease, both autoimmune. Was put on azathioprine (Imuran), an immunosuppressant, for Crohn’s, and the Imuran has also put the sarcoidosis in remission. It’s not unusual, if you have one autoimmune disease, to have another one pop up. But that’s not written in stone. If you can find a good med for you, perhaps the disease won’t get any worse, and go into remission. Keep all your appointments, labs etc. Keep yourself as healthy as possible- hydrate, rest, good diet, avoid stress. My best to you.

      • Sick.but.slick

        631d

        @Coffee_hound I have pulmonary sarcoidosis also

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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