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Please Help! Afraid of having prion disease!
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Please Help! Afraid of having prion disease!

About 5 weeks ago, I started feeling really detached from reality and almost as if I were in a dream-like state. I also had odd visual disturbances, such as increased after-images and increased visual snow. It is harder for me to see things in certain lighting, like in a classroom or the dimmer lighting in my bedroom. Everything also started seeming unfamiliar to me, like my own room or my campus at school, and I went to the eye doctor to see what was going on with at least my vision. He told me that my eyes were normal and to see a neurologist. Later on, I developed even more odd symptoms such as a slight loss of sensation all over my body, which tends so go away and come back. I also experienced burning in my face and legs, and tingling in my arms, middle of my back, and legs, and decreased ability to taste things as well, which also tends to come and go. I went to the ER one day for these symptoms and got a CT which was normal, except the doctor told me I had some volume loss, which she said was nothing to worry about, but I went into a state of utter panic afterwards. Then, I really started fearing that something was destroying my brain, such as CJD or Sporadic Fatal Insomnia. I finally went to the neurologist this past week to be evaluated, and he also reviewed my CT scan, which he said looked good and that I did not have volume loss. I've had blood work done also, which has been normal. This past week, I started having even more problems, with what I'm sure whether or not to consider insomnia. I literally cannot go to sleep, either at night or if I try to take a nap during the day. I feel like my brain will not go into REM no matter what, and that I never even slept when I get up the next day. Sometimes, I feel do feel sleepy but not like I used to. I took sleeping pills one night, which helped me sleep for six hours, which was more than my usual three or less hours a night the few days before. I also have had odd jerky movements all over, which I am not sure whether it is myclonus or not. It tends to happen when I am already moving a body part, like my arm to type, then my shoulder will shrug more than it should and suddenly. I feel like my memory has declined and that I have so much trouble remembering certain things, although it seems normal to everyone else. I also feel so apathetic towards everything and I just don't care about anything anymore and have trouble thinking abstractly. I have moments where I do feel somewhat back to normal, but for the most part whatever is wrong with me really feels like something rapidly progressive. No matter how rare prion diseases are, I feel so sure that I have one, if not SOME type of fatal degenerative disease. I fit so many of the symptoms of the early stages of CJD and sFI. I also have this sense of impending doom, I really feel like I'm going to die from this. And the worst part is everyone thinks I am just fine and need to make these minor little changes here and there, like what I eat and how I sleep, but I know whatever is wrong with me if far more serious. I am waiting to be tested for Cushing's disease, but I don't think it would cause ALL my crazy symptoms. I've also started to feel more and more disoriented, out-of-it, and unable to concentrate, like I don't know what time of day it is and what day it is, although I know it rationally. I swear I've seen one or two hallucinations too, like a huge and really fast bug that I thought crawled across my bed, but I couldn't find it when I looked everywhere for it. I really feel like I am getting worse more and more everyday, just like people experiencing rapid dementia who have prion diseases, and I am becoming more depressed and possibly suicidal because having a prion disease is such a terrible way to die, especially at such a young age. I really cannot handle the derealization/depersonalization/detachment I've been feeling, and I feel like it is never going to go away. I feel so trapped, and that nothing can be done to help me...I've already seen several doctors and had several tests done. I'm becoming such a burden to the people around me and they can do nothing to help me from this. Posting on here seems to be the only way to help me feel a little better, though I know the only way to truly know what is wrong is seeing a doctor, but I've done that several times already with no helpful results...
Tags: horrified prion disease help!
4 Comments Post a Comment
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Also I forgot to mention I am 21 with no known family history of these diseases, but they can be sporadic.
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Avatar_f_tn
Hi, How are you doing? Did you go to the doctor for more testing? Sometimes I have felt some of the symptoms like hullucinations, the sence of doom...stress can do these things..anxiety and panic attacks. I have had panic attacks and some of the symptoms you have could very well be this. There were times that when sitting with a lot of people in a lecture room I would get this horrible urge to scream and just run out of the room! Did you find out about the test on Cushings? Let us know what you learn. Do hope you are feeling better..
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Avatar_f_tn
Thank you so much cronegoddess54! Well, I haven't been diagnosed with Cushing's yet but, I did do a free Cortisol urine test which came back high and now I'm waiting to see an endocrinologist... Now I'm worried about having a pituitary or adrenal tumor and my mental symptoms have worsened along with my persistent insomnia, which makes me think I may actually have something like Cjd or sporadic fatal insomnia and I'm so terrified still. I hope you are doing well also!
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Avatar_f_tn
im a female of 23..i sometimes feel i cannot sleep and i cannot maintain sleep..i'm afraid of sfi and prion deseases as well..let me know about the progress of your health..ihope youre feeling better already
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