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PLEASE HELP!! Neuro sysmptoms - dizziness, vertical nystagmus and eye turned in

Posted , 4 users are following.

mai18
mai18

Hello, I am going completely nuts over the health problems and diagnosis I am having. I have been feeling dizzy for past 3 months, after normal MRI and abnormal VNG showing central findings, I went to see neurologist today. He performed some exams and he saw abnormality in one test where they make room dark cover one eye and shine light. He said when I try to fixate at further objects one of my eye is turned in. I do not have any double vision so far. He also noticed vertical nystagmus on tilt test. where the lay you down and tilt your head. He said I do not have any other central findings other than these two but this might indicate brain stem involvement. He has now ordered all the standered tests like lupus, lyme, looking for MS and other things. I am going completely out of my mind trying to google stuff and thinking that I have one of these terrible diseases, which I know is a real possibility. Please help me by sharing your experience. Other than my life has now completely turned around I also feel lonely in this. Otherwise healthy person brought down by abnormalities in CNS is pretty sad. Hopefully you guys will share your experiences.

1 like, 8 replies

8 Replies

  • Ooooooooo
    Ooooooooo mai18

    Posted

    Hi yes I had the tilt test done they found I had bppv that could be the cause of your balance problem that is easily sorted out , as for the other test where they turn the lights of ,I haven't heard of that 

    let us know how u get on , don't worry they have lots of up to date  technology  now 

    my best teresa 

    • mai18
      mai18 Ooooooooo

      Posted

      Yes all the tests now have ruled out BPPV. the misalignment of eyes suggests that it might be central cause rolleyes
    • Ooooooooo
      Ooooooooo mai18

      Posted

      I had that it's Awfull had it for about 6 months couldn't stand in the end ,I'm recovered from that ,and now having TERRIBLE headaches ,a ct scan revealed I have a pineal cyst 7.3 MM ,I'm seeing a neorologist next wed 20th to see what's going to happen ,

      keep us intouch with your problem as u may see someone else with same problem ,it does help to talk u are not on your own so please don't worry ,where do u live ,I'm in Essex 

      my best teresa 

  • devin10218
    devin10218 mai18

    Posted

    Have you been checked for a csf leak or intracranial hypertension? Checked into that but a lot of drs arent to familiar with it. I hope you get the help you need. It also goes undiagnosed. Some drs think its MS, lyme, parkinsons. Also MRIs and ct scans of the brain can show normal. Also check chiari malformation.
    • mai18
      mai18 devin10218

      Posted

      Yes I have researched non stop for last few days and it driving me insane. They are all so bad that I don't know which one I would rather choose.
  • BS8
    BS8 mai18

    Posted

    Hi 

    I was diagnosed with peripheral and  autonomic neuropathy after 15 yrs of symptoms. I was ignored and told it was psychological all that time. I also have a problem regarding the brain stem, carpel tunnel, pulmonary embolisms. Had mine been diagnosed before it would not have got to this. I was eventually told it was through undiagnosed diabetes so check that out too. They kept stating oh no sugar in your urine, which I now know only shows in bloods. I will write better later as I'm exhausted at present.

    keep on at them for every test you can! 

    • mai18
      mai18 BS8

      Posted

      That is crazy. It took them 15 years to diagnose. May I ask what your symptoms were?
    • BS8
      BS8 mai18

      Posted

      Sure exhaustion, pain, dizzy, thirsty, UTIs antibiotics couldn't explain the exact problem. Referred to 21 consultants and one report read ' I have nothing else to add.' So I spend my life in bed with the windows blacked out. My feet and legs elevated with a massage mat. The massage mats ( and backups) I'm in too much pain without one as they interrupt the pain signals. I do have and electric massage bed but there is a timer on it. You cannot buy one without. If I fell asleep I wake immediately the massage switches off in pain. Also as I'm not really mobile, just to the bathroom and back. Hence the blood clots too. If I stand still for over 30 secs I would collapse. I also suffer from postural hypotension etc etc I will give a list maybe tomorrow. I have photophobia so have to switch this of now!
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