vCJD or: how i learned to stop being realistic and have a panic attack

[skygreen_leopard]

I have convinced myself lately that i have or will get vCJD. I am a logical person and i know the risk is VERY low. But the fact that it is a new/man-made disease and not much is known about it really freaks me out.

What is it about damned statistics that makes us HA'ers so freaked out. I realize that as i pool through medical journal abstracts and various newspaper articles looking for proof i havent got or wont get something that i only fuel the idea that i DO or WILL have it. I am still waiting for CBT on the NHS... quite frankly dont think i'll ever get it, after all i have now waited six months just to see a psych about what meds i should be on.

Anyway, i dont really know how to deal with this anymore, when one thing goes another thing takes its place. I'm really tired of living and i'm only just coming up for 25 :/.

moan over. :)

[skygreen_leopard]

So, i cant shake this fear. i have pretty much told everyone i love i will be dead soon. they dont believe me, obviously. but every day my leg pain and concentration seems to be getting worse, i try to be rational but i keep falling back into the same vicious pit. also been told theres a years waiting list for therapy, ontop of the more than 6 months i have waited for a referral. :weep:

[xtremx]

skygreen leopard

If i could i would give you a SLAP mate stop looking for something you know and others know you have not got, You said it vCJD is a very rare disease.

Believe me I have had ALS/MND and told people i would be dead soon I went as far as writing letters to my wife and kids. Before that i had a deadly heart problam called endocarditis if that disease does not kill you the cure could.

And i have survived both of them REASON because i never had them in the first place. But i still sometimes think about them and also on my way the people i have talk to on the internet who suffer from both and have help me understand that i have not got them.

Please try not to think about vCJD for yourself and family and friends.

Chris:hugs:

[skygreen_leopard]

thanks for the tough love man, its needed sometimes. i know i've really just got to get my stuff together.

[xtremx]

Hello again skygreen leopard.

To Quote you "Just got to get my stuff together" I think is the easy part it is the keeping it together part that is the hardest thing and the only way you can do that is with a support network to be their with you and CBT is a good way to go.

You will have to push your doctor for it or your local mental health team IF you find you are not getting the help you need I am afraid you will have to do what i did and change Doctors it is a pain in the arse but sometimes worth it.

I myself don't really have a network to support me anymore as only have the wife and kids, and I can't burden the children with my problam (they are too young) and the wife finds it hard to understand.

I find myself searching the internet for my help which can place alot of undue stress upon yourself by sometimes get false infomation.

If you ever find you need a chat. Stay cool and just kept trying that is all we can do is our best:D

[Breezay]

I noticed you're in the UK.. You could try asking your GP about IAPT counsellors. They have been sent to areas within the UK and work mostly out of GP's offices. They usually use CBT to help with anxiety and they have to try to keep their waiting lists short.

I think it's ridiculous that you've had to suffer this long without any real support. I hope IAPT is available to you.

The chances that you have vCJD are so very slim. Keep reminding yourself of this. Stop looking up things on Google and try to find things that you enjoy doing to take your mind off your concerns. Easier said than done, I know, but I promise it will help :)

[skygreen_leopard]

sorry for the slow reply, thanks for the support. i have looked into iapt but i cant get it as for some reason it dosent exist in wales. i have started on clomipramine (sp?), which is hitting me atm but hopefully it will do some good. im having terrible pains in my legs which again makes me worry of this, but i have to believe its anxiety or at best something else but benign. :)

[GreekGirl]

Hi skygreen leopard,
If you are serioulsy worried about vCJD then may I suggest that you get your neurologist to send a sample of your blood to Prof.John Collinge at the Prion Unit/Clinic in London. If you check out the prion clinic website you will see they are testing samples of blood for prion diseases and neurological disorders. Collinge has developed a new blood test for vCJD and at the moment it is being trialled on I believe 5000 - 7000 blood samples from the USA.
Here is some more info from the prion.ucl.ac.uk website:

"We are ready to use the test to assist with diagnosis of patients who are suspected of having vCJD or other diseases that might be mistaken for vCJD. Working with neurological colleagues to begin to use the test will also help us get more information on the test itself and hopefully lead to further improvements and understanding of its usefulness. A request card needs to be completed which can be obtained on the website. We require 2 x 5ml EDTA vacutainer tubes. For sample delivery please see further details on the website. While we are working to increase the throughput of the test, at this stage it remains relatively labour intensive. Whilst we will attempt to return results at the earliest opportunity, clinicians should allow up to four weeks for results. Please call the Clinic for further details.
The National Prion Clinic at the National Hospital is happy to take telephone enquiries about suspected prion disease patients. We are particularly interested in referrals of patients at an early stage of their illness when diagnosis is most difficult"

I hope this information is helpful to you, all Neurologists should be aware of this and I would imagine many GP's, however, I think in this day and age it is a case of doing your own research to find out the latest tests etc.
The terrible thing about vCJD is that is affected millions of us including myself between the years 1980 - 1996, I cannot be a blood donor nor can I donate my organs all because of exposure to infected meat, vaccines etc, shocking to say the least.

---------- Post added at 11:52 ---------- Previous post was at 10:29 ----------

Just another thought skyleopard, apart from being able to telephone the prion clinic your GP should be ruling vCJD out if you are concerned as you are, the GP should really have this test done for you and go from there. That is what I would do.
Good Luck