vCJD (mad cow)

[HopeI'mWrong:P]

Hey

Ok so first post on here (not really relevent) but thought I'd let ya know in case I've posted this in the wrong bit or something, and you're thinking... what's this girl doing??? lol

Anyways, I've read stuff on here about peoples vCJD worries, but I feel like I should post a new one on here because I feel I'm more at risk than others! I was born in the UK in 1988. Ate loads of meat since being a kid(loads of processed meat at that!). ASWELL as this, I had an operation in 2002 which meant I also had to have a bone graft and blood transfusion.

Anyways, for a while now I've been feeling a lot of fatigue. Didn't really think much about this. But then came muscle twitches, although they've been happeneing for years now (usually when I'm tired... and especially when I'm hungover :P) This year however, I've been experiencing kind of tremors. Not like when I'm just sitting there, but when I move. For example, if I have to lift my leg (like to get out of the bath or something), well when I put it down it shakes, and so does my back! Also, my eye has recently started feeling heavy, and is blury in the morning.

Been to a neurologist and they said it's anxiety... but I (obvs) don't think this! And he said there's nothing wrong with and that my eyes are fine. At first I accepted it, but I've read that some people who had vCJD saw neurologists and their tests came back negative (like mine!) so they thought it was phyciatric.

Anyways, I've read a lot of posts on here about muscle twitches, but it's the tremors and eye problem that's really making me (very) nervous! Has anyone else experienced any kind of tremor and now know they're ok???

Thanks x

[SheilaH921]

when i wake up in the morning i cant see out of my right eye its that blurry! This has been going on for a few years now. The optican said this is normal in some people and that the eye can take a while to focus properly when you wake up.

I do get weird twitches sometimes. Like my arms or head would twitch. I remember going to the doctor years ago cuz i was worried that my head was twitching. He was laughing at me cuz i read in to everything. (back then i found it kind of funny cuz my
anxiety wasnt as bad as it is now)

Anyway i really believe anxiety causes all these problems, i actually think i only notice most of them when i am anxious and i read into everything my body does.

I would accept what the neurologist says and try and accept that you are ok. Dont google other stories and try and distract yourself and relax. I bet when you do alot of the symptoms will go away and you'll know its anxiety xx

[Pipkin]

Hi there,

All the symptoms you've described are quite common in anxiety disorders. You've been checked out by a specialist and you must try your best to accept what you've been told. I know that can be incredibly difficult as there are always high profile cases of mis-diagnoses but, in reality, these are very rare.

The difficult thing for anxiety sufferers to accept is that the physical symptoms can be severe and people search for other causes as it seems impossible that the mind can cause these. It really can! The more you search for answers though, the more you'll be convinced something's wrong and you get stuck in a vicious circle, feeling worse and worse.

Take care

Pip x

[HopeI'mWrong:P]

Thanks for the reply Sheila, it's appreciated :')

Think it's mainly the tremors I'm afraid of. Feels like if I move my leg (another example is when I walk downstairs) that my leg and my whole back (up to my neck) shakes.

And I hate to be one of those "and another thing" people, but I am! haha. And when I put my bottom and top front teeth together, they vibrate loads! And again I got told this is anxiety, but it gets worse when I look up (I know, it's such a weird thought and you're probs thinging "what the hell, how did she even find that out?!) lol... but somehow I did, and so I think, it must be physical?

Sorry to chat on like a crazy person! (but maybe I am?) lol!

---------- Post added at 21:24 ---------- Previous post was at 21:23 ----------

Just got your reply too as I was writing this Pipkin, thank you too! x

[SheilaH921]

Have you been referred for therapy or given meds? Are you on any meds that can cause this as a side effect?

[HopeI'mWrong:P]

Yeah I've been refered to a CBT...person? (what ever they're called?) lol. But been on the waiting list for nearly 2 months now! No not on any meds. I was given beta blockers but then I felt like every symptom I got wasn't being taken seriously becasue the doctor was blaming it on the meds and it wasn't them. And I was right! Because the next time I went to the doctor, he blamed my symptoms on the meds, until I told him I wasn't on them anymore!


And you're right Pip, sometimes if I'm stressing out about it, I'll think "oh I'll just look up this symptom, I bet it's not a symptom of the disease, so it should put my mind and rest"... so I do it and it's like... "Oh... well that was a mistake" lol.

I think the best thing to do is to try and completey avoid any stories relating to it!

xx

[sammie23]

My dad is dieing in hospital because he has cjd :-( A very rare but vicious uncurable disease :-( The things is with cjd is that it has no DNA. So therefore can not be found through MRI scans, lumbar punctures or bloods. Iv been thinking myself that I have this or ataxia disease as I have tremors, uncontrollable body jerks, headaches, funny vision :'( The thing is with cjd is that the symptoms are pretty rapid n wen u start with the symptoms u deteriate everyday which is what I'm seeing with my dad n it's braking my heart. Only 6 weeks ago he was a happy hard working loving man and within this short space of time he can no longer walk, has seizures, confusion, going blind, very sleepy, numbness down the left side of his body and completely numb down below :-( Its absolutely horrible. He is a lovely man and only just turned 50. Xx

[HopeI'mWrong:P]

I'm so sorry about your dad! xxx It's an awful disease. Yeah symptoms of CJD are rapid. You probably do think you have it as you're witnessing it first hand, but you're probably ok, as CJD tends to affect people over 45. It's just vCJD that affects younger people, and has different symptoms. But I completely understand why you'd worry, as most people worry when they read a stroy, but for it to happen so close to home, it's bound to have an affect on you :(

Again, I'm so sorry about your dad xxxxx

[GreekGirl]

First of all I would like to say how sorry I am to read about sammies dad, this is absolutely tragic and he should never have ever been exposed to this in the first place. During 1980-1996 millions of us in the UK were put at risk from rogue infectious prions and today we are still witnessing people dying from this incurable disease. Recently in the news it was revealed that at least 24,000 people in the UK are carrying this disease and could develop it anytime during their lifetime also they have the ability to pass the disease on to others without developing the disease. There is a vCJD (prion) blood test available at the prion clinic in london, all neurologists are aware of this blood test developed by Sir John Collinge, according the news reports 5 - 10 samples of blood are sent for testing each week, so if you are seriously worried about this disease then your GP/Neurologist can send your blood to be tested for vCJD. The test was developed for people with the early stages of the disease and particularly younger people over the age of 16. More information/publicity should be available about this as many people are totally unaware that you can still be affected today.