Just diagnosed

Posted , 2 users are following.

I have had "strange" symptoms for the past 8years.

Things like, my eyes will go blurry with specks and I have,no peripheral vision. It's like I have blinders on my eyeball. And always after that eye thing happens, I get a squeezing headache in the back center of my head. I drop things. This started in 2007. It started with my left leg. I had drop foot. For about 2 months I could barely walk. But the worst of it all is the terrible feeling of lethargy! !and insomnia at the,same time. There are days that I lay down, and just cannot get up. .

So since,I am just recently diagnosed (5-13-16). I haven't been to the neurologist yet, but I did have the MRI. My primary doc gave me the diagnosis. I have been all over the Web researching everything I can. So any info I can get here will be more comforting than articles.

2 likes, 9 replies

9 Replies

  • Posted

    Hi Michra,

    can you say what you have been diagnosed with?

    I get the eye ball thing too, especially after using the computer for too long in the dark (don't sleep well so computer is my best friend).

    • Posted

      Hi Julia, I have been diagnosed with chiari malformation.
  • Posted

    Ok, so you could have Syringomyelia but your neurologist would have to confirm if it's this or something else. Your symptoms match some of mine - I tend to drag one leg but it's something other people notice because I don't realise I'm doing it. The head pain is the worse to deal with though for me. Try not to worry too much, you'll just scare yourself by reading too much info before seeing a specialist. How old are you if you don't mind me asking, I was 39 when diagnosed.
    • Posted

      Oh it's definitely Chiari....but I can't see the neurologist until the end of June! I'm actually glad to knowwhats,wrong because now it can be treated.
    • Posted

      I will be 45 in December. .and the onset was 8 years ago.
    • Posted

      And the eye thing happens out of nowhere! Then I get the horrific headache. I can't form some of my words right, and my mouth tastes like metal. But my neck doesn't bother me. At first my Dr thought it was MS..So I went for an MRI..
  • Posted

    Did your doctor mention having a foramen magnum decompression op or Syringomyelia, not sure but I think there are 3 different types of chiari malformation. Type 1 is the most common and the treatment is painkillers or the operation depending on how big the syrinx is and how it's affecting you.
    • Posted

      This was just my primary Dr..and she said that the MRI report showed the Chiari...then reffered me to the neurologist. She didn't really go into details.
  • Posted

    I really feel for you! It's horrible having to wait. I was almost suicidal with the head pains but they did ease up a great deal after the operation. With me the speech thing came with the headaches. When the pain eventually subsided my speech returned to normal. It certainly sounds like you have the same thing so hopefully you'll be offered the op then you'll feel a whole lot better!

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