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bboxer (@bboxer)

Pulmonary Sarcoidosis: How are you dealing with it?

Lung Health | Last Active: Aug 10, 2020 | Replies (106)

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@ryman

The neurologist I have now is looking into my sarcoidosis. After having nodules removed from my lungs years ago, none of my doctors said anything about sarcoidosis. But now I have lesions in my brain. I am concerned it may be neurosarcoidosis. I am having a spinal tap Tuesday. I expect this will provide some answers. I did not realize this was such a serious disease. All I had read before seemed to play it down. I am so sorry for what some of you are going through.

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Replies to "The neurologist I have now is looking into my sarcoidosis. After having nodules removed from my..."

That’s how they found neurosarcoidosis on my husband was a spinal tap, he has seizures everything has changed including he gets mean and moody, smells and food has changed

I get very odd smells at weird times. Coffee making at 3 AM, flowers, cigarette smoke. I have noticed,too, that I am getting rather cranky lately. I am alone most of the time so my poor cat has to listen to it. Well, she just goes upstairs and sleeps. That is something I do a lot of during the day, could fall asleep standing up, but can’t t sleep at night. My husband was sick for several years before he passed, mostly from strokes and diabetes. I wish you both well.

Your smells might be just before a seizure

I pray for you that you don’t have neurosarcoidosis it kills me watching my husband .

what do you mean by “smells and food has changed”?