It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Rare Disorders Message Board

  • Variant Creutzfeldt-Jakob Disease

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 10-11-2013, 08:24 PM   #1
    Niel's Avatar
    Join Date: Oct 2013
    Location: Denver, CO, United States
    Posts: 2
    Niel HB User
    Post Variant Creutzfeldt-Jakob Disease

    Hi everyone, I'm new to this site.

    You probably saw the title of my thread and thought 'oh, it's one of these folks'. I admit, I'm a hypochondriac and I know that vCJD is one of the rarest ailments out there, and no real diagnosis has been made in the US (so we're led to believe), but I can't help but fear I may be the end of that trend.

    I've noticed that whenever I read about someone who was also scared of having this disease, it always goes back to their anxiety/depression, or maybe some tingling they've been having.

    Absolutely no one seems to share my problem: dysesthesia.

    Apparently, this is one of the early possible symptoms with vCJD, and it's got me really scared. It just started this week, but I've already gone through a swath of sensations.

    Tingling, burning, sharp stabbing (ever been poked by one of the metal hairs on an old cat or dog comb? kind of like that), painful electric zaps, and pins & needles are the best descriptions I can give. They're random and have been happening all over my body, which also scares me because whenever I read about dysesthesia, it's always located in one or two specific places. It seems like no one ever really gets it system wide like I have, not even those with MS - which, along with brain tumors, I suppose is another possibility, but I'm not really having any other symptoms except for some spasms.

    Which is also a vCJD symptom.

    I went to the doctor today and she's gonna run some blood tests, but I just know nothing will turn up. I suppose the next step is to go see a neuro, hopefully get an MRI or EEG. I almost want to run out to a hospital and demand that they give me a tonsil biopsy to look for prions!

    Not really sure what I should do - what I can do. Take a Klonopin and try to chill out, I guess. I don't suppose anyone else has had experience with dysesthsia?? Or knows if there's a big difference between it and paresthesia? The medical world can't seem to make up it's mind about which is which.

    Sponsors Lightbulb
    Old 10-30-2013, 08:48 PM   #2
    Niel's Avatar
    Join Date: Oct 2013
    Location: Denver, CO, United States
    Posts: 2
    Niel HB User
    Re: Variant Creutzfeldt-Jakob Disease

    Just a little update:

    So with the help of a low dose of amitriptyline, I've got the pain - which could also be described as allodynia since I get pain more from things touching my skin - more or less under control, but I still get occasional wet or burning sensations in limbs.

    I don't know if it's the drug, which I hope it is, but I'm also feeling excessive sleepy lately. I'll sleep 8 hours and feel sleepy 10 later.

    On top of that, I've also been experiencing jerking limbs and cramps. They jerks are not violent or anything, but still verry worrisome.

    And to cap all it off, I've also been feeling dizzy.

    I have an MRI this Friday afternoon. It's terrible to think that I hope they DO find MS lesions or a tumor or something, since vCJD isn't really something you can see on an MRI.

    Would my jerking limbs be myoclonus? Does anyone know what myoclonus is like? I'd appreciate any tips you guys could give me.


    Old 10-30-2013, 10:12 PM   #3
    Senior Veteran
    Join Date: Jan 2007
    Location: Australia
    Posts: 5,442
    Seraph HB UserSeraph HB UserSeraph HB UserSeraph HB UserSeraph HB UserSeraph HB UserSeraph HB UserSeraph HB UserSeraph HB UserSeraph HB UserSeraph HB User
    Re: Variant Creutzfeldt-Jakob Disease

    Get off the Internet! Dr g00gle is not the place to look up symptoms. Everything you have described has been a symptom of anxiety for people at some time. Get your tests by all means to clear your mind, then explore therapies for anxiety. Wishing you well, Sera

    Old 10-30-2013, 10:16 PM   #4
    Senior Veteran
    Join Date: Feb 2007
    Location: Chester, VA
    Posts: 2,200
    noevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB User
    Re: Variant Creutzfeldt-Jakob Disease

    Hi, I don't know anything about the disease. I hsve taken amitrytiline. It will make you drowsy. I learned to take it only at night about an hour before bed. Oh yeah it will make you gain weight too !

    I get the jerky limbs sometimes too but I don't know why.

    Just try not to over think things and do what the dr says. I take a notepad with my questions and so I can write what he/she says. Good luck and let us know how things go.

    Closed Thread

    anxiety, central nervous system, dizziness, health, help asap

    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off

    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 08:13 AM.

    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!