HELP. Terrified i have vCJD

[Karlos007]

Hi guys, sorry for the long post, but i've got a lot on my mind and i really need to get it out there and written down.

Basically Im a male, 27 years old, with a good job and a loving wife who is about 15 weeks out from recieving our firstborn.

around the start of may we went on holiday to spain with my inlaws. Id been working ten to the dozen in my job right up to the day of departure and was really looking forward to the holiday. Anyway, Whilst i was on holiday i noticed that my little finger on my left hand had started to tremor, moving from side to side on its own if i held my hands out, fingers apart. Me bieng me, i immidiatly jumped to the worse case scenario and thauhgt " what if i have parkinson or some other neurological illness, such as CJD " over the course of the holiday i kept checking my hands and the finger kept tremoring. after 2 days i noticed my little finger and my secound finger in on my right hand had started to tremor as well. This increased my state of panic futher and i then started to find i was getting finding it more and more difficult to get my words out and started focusing on that as well. Towards the end of the holiday i began to notice whilst i was driving i would be touching my face a lot, and was obviously getting rather adjitated by the whole situation. When i got back to the uk i then had my trusty friend the internet back at my disposal. Obviously i used this time to read up on CJD and to my fear tremors, speech difficulties ETC were listed as symptoms.

I also felt as tho i had trouble co-ordinating the mouse and typing porperly which i didnt have before this all started. I went to the doctors and he sent be for bloods to see what could be causing the tremors, but all the results came back negative. Since then ive developed major anxiety. the day befor i got back to work i went in and i felt lost and like i didint know what i was doing, and to my distress i found i couldent even remeber the names of people i have worked with for 10 years. This really paniced me and i went to the doctors and told him my fears. hes sent me to a nurologist to look into the tremors and has put my on diazapam to try and calm me. I actually felt well for about 4 days after i went on the diazapam but now i feel as bad as ever.
Im going over music in my head all the time, i have a blanket state of panic over me, i feel as if my whole body is shaking, im constantly checking my balance, looking in the mirror to check my smile which seems to be twitching, i cant function at work. I keep trying to tell myself that if i had human mad cow dieses that i wouldent have forgot the names of pepople 3 weeks ago yet rememeber them now, or that i wouldent have felt that i couldent use my hand properly or write with a pen 3 weeks ago and not now. a degenerative dieses shouldent get better then worse then better. But i am filled with the worst kind of dread that i am not going to be around to see my baby, that i am losing my mind, having bad thaughts. Im also having trouble reading, predicting what the words i am reading are going to say before i finish reading them, and just thinking random things in general. i feel dizzy, like my legs wont work properly. which in tern make me test things like walking and balance, obsessivly. Its destroying my life and im so scared.

the problem i have is that anxiety is a symptom of CJD, so being told all my other symptoms are bieng caused by anxiety dosent really seem to help me stay calm or relax, all it does it make me think " oh so i have a symptom of CJD " rather then think that im am suffering from anxiety.

Any thaughts.

[daisyd]

Hi there,
Everything you have just written, I have experienced myself...so I hope that reassures you for a start, and my fingers have been moving by themselves for a couple of years,I have noticed on and off. The actual likelihood of you having vCJD is extremely slim, whereas the chances that you are suffering anxiety at the moment are a whole lot higher ( you have a new baby!). In the last 3 weeks I have been having trouble walking and feeling like my arms and hands don't work. Also numbness, skin burning, panic attcks in my sleep etc etc I couldn't hardly hold a pencil to write one day, and I am having trouble swallowing too- so had/have the same neurological worries as you. I have had lots of blood tests done and I had very low iron ferritin results so I am now on iron supplements. Due to this I did some research and found that a good B complex vitamin is great for the nervous system so I am taking that too, so I would recommend that (Boots). The anxiety sections on this site have really helped me, as has having some positive mantras ready for when the bad worries come into my mind. The worst thing to do is to just dismiss your anxieties as silly or try to ignore them as they seem to just keep tormenting or come back bigger!! Let them float in and out of your thoughts but give a rational explanantion to them and then they should be more manageable as time goes on. You are at a very stressful time in your life right now, and are probably tired, slightly run down and have little me-time, but I promise you it will pass, and is only temporary. All the best, and keep sharing your worries because then you will be on the road to recovery!
Best Wishes

[daisyd]

Hi again Karlos007,
Forgot to mention that I had the same anxieties on holiday, and I too was working reallyhard prior to going away, and then was riddled with anxiety on holiday. I think that after being so busy and stressed before a holiday, means that the contrast then of trying to relax and having little to worry about causes you brain to work overtime. It is a complete nightmare! I am trying Yoga and Pilates at the moment and reading about 'mindfulness' which is a buddhist philosophy to enjoy every minute using your senses to the full, and not to focus on more than one thing at a time! Also you could try crosswords, puzzles,suduku, playing an instrument, cooking, etc so that you replace your brain activity with a physical activity!
Worth a try...good luck...it has helped me. x

[neptuno]

Karlos,
Congrats on fatherhood ! Your post really highlighted the stress you've been under. I'd suggest having a thourough check up at the Docs, be truthful with yourself and acknowledge any anxiety or worries you may have the you can start to eliminate them. Fingers and hands that have a mind of their own can be due to a spasm (I think its called titanic spasm) all stress related.

[chalky]

Hi Karlos,

Welcome to the Forum.

:hugs: :hugs: :hugs: :hugs:

You will get loads of support and advice here.
There is no test for CJD-it is detected post mortem or by a biopsy of the brain.
If you put all your symptoms into a Google search no doubt you would be faced with a long list of potential conditions.One of those would be Anxiety.
Don't Google.
Quit worrying about what you might have and deal with what you do have.
You do have Anxiety and if you deal with it,your symptoms will subside.
Check out the Coping Strategies in the Main Menu.
You can and will recover from this if you work at it.
Best wishes,
Chalky

[Trixie]

I think you are worried/excited/nervous about this new baby that is about to arrive and of you becoming a daddy for the first time.

I doubt very much if you have vCJD. Anxiety and stress can manifest itself in many forms.


Please don't worry about having vCJD and concentrate on this new life that is about to arrive soon and wants their daddy to love, spoil and protect them.

:flowers:

[Karlos007]

hi guys
thanks very much for all the replys.
everyone says its anxiety and i really would like to tihink that they are right.

trouble is its like everyday there is a new symptom, now im having involentry jerks in my limbs and its really scaring me!

doctors have put me on citalopan hydrchloride ( i think ) to try and sort out the anxiety but im sure im dying of cjd!
so scared.
thanks again for your replys!:bighug1:

[Trixie]

hi guys
thanks very much for all the replys.
everyone says its anxiety and i really would like to tihink that they are right.

trouble is its like everyday there is a new symptom, now im having involentry jerks in my limbs and its really scaring me!

doctors have put me on citalopan hydrchloride ( i think ) to try and sort out the anxiety but im sure im dying of cjd!
so scared.
thanks again for your replys!:bighug1:


You are not dying of cjd.

Have you thought of any names for your new son/daughter?

I remember when my oldest was born I was excited and scared (even though I had nursed babies before) but it all turns out OK in the end. And very soon they will be the apple of your eye.

:yesyes:

[Karlos007]

You are not dying of cjd.

Have you thought of any names for your new son/daughter?

I remember when my oldest was born I was excited and scared (even though I had nursed babies before) but it all turns out OK in the end. And very soon they will be the apple of your eye.

:yesyes:

yes were calling him ben!
not long now till hes here, just hope his dad either dosent have CJD or dosent go demented thinking he does...

[Karlos007]

Just had a nap beacuse i havent been sleeping so good and ive wokend up trembling real bad. Cant seem to concentrate either, all my thaughts are so jumbled up its unreal. I feel like im loosing myself to this.
Im so scared. what shall i do???

[Marginalia]

*hugs*

I went through the vCJD-fear stage about 10 years ago, or whenever it was it was first in the news, when people were projecting it could be an epidemic. Like you I got a twitch in my hand - might have been my left thumb. I also developed a twitch in my eyelid which lasted two months. I didn't know at that time that twitches are a really common symptom of anxiety. It subsided eventually.

To this day I don't eat beef.

You're really panicking about it which is making a vicious circle of symptoms, but it's really good that you went to your doctor. Talking to a counsellor may help too. I think daisyd hits the nail on the head: look at what is hapening in your life at the moment and it's a pretty significant coincidence that you're coming up to this huge life-changing thing, and you've developed panic.

This is exactly what happens to me - for whatever reason I seem to displace my anxiety about huge real things (which I feel consciously quite calm about) into health anxiety about completely unrelated imaginary things (of course they don't feel imaginary at that time).

I rarely revisit the same health anxiety more than once, so I've 'had' vCJD now - perhaps it's not scary enough any more. Currently I have early onset Alzheimer's instead (I'm 41) and although I deduce it must be health anxiety because it's so improbable and health anxiety is what I do when I'm stressed, it's still hard to fend off that part of me that thinks, yeah, but, maybe I really am ill this time, and degenerative brain disorders are the scariest thing ever (of course I have to give myself the scariest thing ever - coincidence?! - you know, I'm at the point I'm wishing it could be cancer instead).

Really: been there done that and I sympathise completely with you. All I can stay is stop googling scary things and google about anxiety, if you must google at all. ;)

[Marginalia]

Just wanted to add that you're doing really well bringing your rational side to bear on things. Another thing to ask yourself is why did some of the symptoms develop only *after* you read about those symptoms being associated with vCJD?

As I said part of me is convinced I have Alzheimer's, and I mostly manage to talk myself out of this, but the panic gets triggered every time I notice myself making an absentminded slip or a memory lapse (had a night of panic last night because I'd been to a meeting and not recognised a woman I'd spent a few hours with, in a group, about a month before). Like you I look at my handwriting and think it is deteriorating. Every time I get two letters in the wrong order or include an extra letter by mistake, it triggers the panic.

I'm not sure, but maybe there are four things people like us have difficulty with (depending on the individual):

(1) realising that slips, lapses, odd pains, twitches etc. are actually pretty common (we just don't notice them when we're not anxious)
(2) realising that the probability of anything being seriously wrong is actually incredibly low (vCJD is really rare - and the publicity it gets is completely out of proportion to its incidence)
(3) not being very good at coping with uncertainty (so even a 0.001% chance of something means we have to dwell on that possibility.
(4) such a feeling of dread associated with that thing that we fear the fear we would have if we did actually get it, fearing we just wouldn't be able to cope at all

[Marginalia]

Oh, and one more thing (I just can't shut up once I get started :blush:)...

You say: "But i am filled with the worst kind of dread that i am not going to be around to see my baby" - do you think it possible that this is your way of worrying that you may not be able to be an adequate father for your child? This is such a classic worry for parents-to-be.

My father has always been a worrier. Apparently he went to the doctor about it and his doctor said once he had children he'd stop worrying about himself and start worrying about his children instead. ;)

I remember speaking to my father on the phone a few days before my half-brother was born (my father's fourth child), and he was really gloomily convinced something must go wrong with this one, since the other three had been healthy births. He muttered something about 'nemesis', which I think is a Greek myth (he's a classicist) suggesting that if you take too much joy or pride in something, fate will come back and punish you.

I think he had a superstitious fear that he dare not hope and expect things to be all good, or he would be punished. Maybe he even felt he didn't deserve such happiness.


My half-brother's birth was equally as unproblematic as all the rest (as most births are), and all four of my father's children are fine.

[worriedsick2009]

i know im bumping an old thread here but i basically have the same fear and i have been in a panic for 2+ months. OP did you ever overcome this fear? (basically it would be very comforting to me to hear that you did not contract vcjd).

[keyhan]

You are not dying of cjd.

Have you thought of any names for your new son/daughter?

I remember when my oldest was born I was excited and scared (even though I had nursed babies before) but it all turns out OK in the end. And very soon they will be the apple of your eye.

:yesyes:
i have more complicated problem i think i will get vcjd by cutting my hand
with a device made in uk in 1994 .can any one help me?

[LaNae]

This might sound bizarre but thank you so much for this thread. I have had a vCJD phase recently and reading about other people terrified about it helps me get it into perspective. I can easily see the worries of other's being overblown and due to anxiety but when it comes to myself everything feels so real. I convince myself that because I must have had beef at some point in late 80's/early 90's I could be harbouring dormant CJD.

All I can say is I know how you feel. Your symptoms sound just like anxiety to me. It does crazy things to the body. I remember having a bout of Parkinson's fear and stretching my fingers out and noticing my ring finger shake. Or that my arm shook when I held a glass of squash.

Now I'm mostly onto other things and it's funny how the symptoms change with my fears.

[LaNae]

i have more complicated problem i think i will get vcjd by cutting my hand
with a device made in uk in 1994 .can any one help me?

I've got to say I have no idea how that would be possible at all. CJD is transmitted by prions through eating the meat of an infected animal, not by cutting your hand on an object.

[randomworry]

i used to have this mad cow disease fear then i realised basically everyone ate beef and not everyone gets it- its far too rare to worry about.

[LaNae]

Need some help guys.

Just read about dormat CJD and am now sick I might be harbouring this without knowing. I'm worried this might turn into a panic attack and no idea how to calm down :(