Fear of cjd

[Mukio]

Hey fellow sufferers,


I know there are some threads with this out there, but I have this fear very acutely, and just need someone to talk.



Earlier this year (February - May) I had an intense stretch of health anxiety because of really worrisome symptoms (intense forgetfulness, lack of concentration, empty head, racing thoughts, tremors etc.). I was convinced that I had a degenerative disease, particularly Creutzfeldt Jakob, variant or sporadic.

Then, I found this forum. Reading the posts really helped me and I decided to adopt a '**** it all' attitude, and it slowly went away, without me really noticing.


The summer was fine. I didn't notice anything, memory came back, anxiety was gone. But 3 weeks ago I heady a heavy relapse after a night of weird dreams. Now, I feel like it's worse than ever, and again, I am persuaded that I have a degenerative disease: my fear is again Creutzfeldt Jakob. I'm from Switzerland and we had a lot of BSE cows in the past (though no case of vCJD as of now). So I'm fluctuating between thinking that I'm the first case of vCJD bc of meat in this country, or a young sporadic case (I'm 33).



I have been a hypochondriac all my life, and I realize that I've 'had' this earlier this year, but this time it's so intense. In the morning, I can't get my thoughts in order, I don't know where I am, and what I'm supposed to do. I surprise myself because I do things twice (forgetting that I did them before) or realizing that I didn't do what I thought I had done. My concentration went down the drain, and I have to really think hard to remember the time of day, month or even year. I am constantly worrying, thinking I'm not really here, losing control, going crazy (even as I write this I feel like I can't say what I want, or am writing things that I'm actually not writing). I'm suddenly not sure anymore how to spell words in English: i make lots of mistakes and almost every word I have to double check. I constantly feel as if I'm on the verge of losing my ability to write, talk, remember etc. I'm at the point where I'm just waiting for the moment when I won't find my way home anymore, won't realize how the washing machine works, etc. I feel really demented. It's so awfull.


I guess I'm mainly here to vent and to find others who have these symptoms too. Are there others who have had such strong cognitive deficits? Or relapses like this? How do you deal with hypochondria returning? Anyone else afraid of Creutzfeldt Jakob? It's such an awful disease. I read stories about it on the internet (ofc - like the stupid hypochondriac I am), and now again I'm really worried....any kind of consolation will help.

[NancyW]

. I was convinced that I had a degenerative disease, particularly Creutzfeldt Jakob, variant or sporadic.
Anyone else afraid of Creutzfeldt Jakob? .

Not me and you know why? Because I don't google sh*t.

Thank you though, you've helped me be strong yet another day by reminding me I'm going to set myself on a spiral from hell if I start that nasty habit again.

If you're seriously concerned see your dr about your symptoms and your anxiety.

[Mukio]

Well, glad I could help you....


I did see my doctor (who was not concerned but has sent me to a neurologist). But the thing with this sickness is that you can only make the diagnosis after death. This is what makes it so horrible. It's basically just a waiting game...and this is messing with my head a lot!

[lofwyr]

What Nancy said. The peace of mind one gets from not googling is so vast.

If a diagnosis can be made only after death, then why worry about it. It is literally the last thing you can do anything about.

That said, I am in a solid place anxiety-wise, so I looked it up. In the US there are around 350 cases a year. That is roughly 1 in a million.

In the same population, there are roughly 30,000 car fatalities in the same year, and almost no one with HA worries about car accidents, and the truth is they have a much higher chance of killing any of us than these off the wall, super rare diseases.

[Mukio]

Hi lofwyr,


thank you for your reply.



In some ways, my head agrees with you. But the fear is often stronger. I can tell myself a thousand times that if I have it I can do nothing about it. Also that its so rare...dying later today while crossing the street is more likely, I know. But what stresses me, and that's the way in which statistics don't quite work, is that I have the symptoms. I can live with the uncertainty of a car accident because I don't have the feeling that it will happen soon. That's what I'm struggling with always (and particularly now).


But anyway, thanks for the reply and the statistics.

[NancyW]

Well, glad I could help you....


I did see my doctor (who was not concerned but has sent me to a neurologist). But the thing with this sickness is that you can only make the diagnosis after death. This is what makes it so horrible. It's basically just a waiting game...and this is messing with my head a lot!

Glad you hear you saw your Dr and he was not concerned, when are you seeing the neurologist? What did your Dr say about your anxiety and how to treat it?

[Meriland30]

I had a severe spat with the idea of having CJD last year. It was so bad that the more I worried about it, the more new symptoms appeared....including stress induced aphasia and aggrammatism. The more I truly learned about the disease in detail, the more I knew I was making a mountain out of a molehill.

When it comes to aggramatism and forgetfulness (as you describe) it is not personally noticeable...others notice it. You would replace words for similar ones, not noticing the issue. You wouldnt be able to knowingly correct it....like you say you do. Your grammar and pinctuation are spot on.

Sporadic CJD is the most aggressive, short lived variant with a average survival time of around 6 months, with the main feature being permanent progressive neurologic defects, ataxia, myoclonic jerks, etc. If you had this month's ago, only for it to go away and come back, there is no way it would be CJD. It never waxes and wanes. You would be so bad right now that you wouldn't even know how to type or what a keyboard even is. You would be bed ridden and spoon fed. You are fine.

The variant type lasts longer but the symptoms are different. Memory loss is not a major component, behaviour is. You would be extremely unstable and maybe violent...this type is VERY rare..and you would literally need to eat COW BRAINS to aquire it. Unless you eat locally farms sweet breads, I think you are in the clear.

CJD is one of the most common fears I see on this site, and I was one of those people. None of these people had it. The reason it is such a prevelant worry is cause most of the symptoms can easily be induced by stress and hypervigilence. It is incredibly rare...incredibly.

---------- Post added at 18:14 ---------- Previous post was at 17:58 ----------

cervelle de veau, not sweet breads
.sorry.

[chrisfromflorida]

Hi Mukio-
I have had similar symptoms as yours starting in around May of this year. I have had HA for years but had it mostly under control until the last year or so. I started to notice I was not remembering new faces and new people at first. It grew into having trouble keeping track of my future schedule or remembering what I had recently done. If pressed I could figure it out but there was no doubt a big lack of sharpness and clarity. I constantly test my memory, what I did yesterday or last week, people I met, etc. It has become consuming. I feel out of it and off kilter as well. My mental clarity is off, typing seems more difficult, forgetful of course. I forget some tasks that are work related and forget what we have planned for the weekend. I had a fear I was developing early onset dementia. I went to a neurologist back in July when things started to really bother me. He gave me an exam in his office in which he asked 30 questions. I passed this test but he sent me for further testing as precaution. I had an MRI, Neuro-psychological exam (this is 4 hours of mental testing) and an EEG of the brain. All tests have come back completely clean. That of course helped but yet I still am suffering from these symptoms. Most days I can put it off to anxiety but others I cannot. I come to this site for reassurance looking for folks with similar symptoms that are caused by anxiety. I find that there are not nearly as many posts about memory issues as other concerns. But there are some and it is helpful.

Something I read here a couple months back really helped. Basically folks suffering from these terrible neurological diseases do not even know they are having issues. Sarahnadine mentioned that in her post as well. The medical term is anosognosia. And according to a former neurologist who posted here in the past, this is a hallmark characteristic of neurodegenerative disease, the person suffering does not perceive the problem. This is clearly not us!!!
I hope that knowing others have experienced similar symptoms and been cleared by a neurologist that specializes in memory disorders helps calm your nerves a bit.
You just have to stay off google and honestly be careful what you dig into on this site as others can accidentally stir up new fears. A perfect example is myself as I had never heard of CJD until coming to this site!

Best of luck and please write back if you need to chat.


Cheers


Chris

[Mukio]

Dear Sarah, dear chrisfromflorida,


Thank you so so much for your replies. They help me immensely.


Nevertheless, I ended up at the psychiatric emergency room yesterday morning. I had a terrible night. It got to the point where I wasn't sure anymore what's normal and what's not. What do I need to remember and what is ok to forget? I ruminated on such thoughts for so long that I got into a huge panic, and now everything scares me. Suddenly, I'm very insecure about everything. Will I be able to write this email? Will I be too confused? Will I remember that I already shaved later?

I was helping my mum move some things yesterday, and suddenly I was immensely insecure about whether I was doing this 'right' or 'wrong'.


This all scares me so much. It seems to me to be typical symptoms of a decreased intellect, problem solving skills, etc. all so characteristic of dementia (or in my case, CJD). I'm at my wits end.


Did it also ever get so bad with either of you guys? Did you ever scare yourself into being afraid of everything, and thinking: will i even be able to use the washing machine anymore? (I also had to look up washing machine on how to spell it...and it still looks wrong somehow...MAJOR PANIC)

[chrisfromflorida]

Mukio-


Sorry to hear you are not doing well. I have definitely had some instances of feeling like my thinking was totally screwed up. Decreased intellect and problem solving have absolutely taken a hit. But as I said, I have had all the tests they use to detect degenerative neuro disease and they are clean. My symptoms are close to yours and I was CONVINCED I had one of these diseases. I mean CONVINCED just like you are.

Please please please keep in the front of your mind that people with these diseases do not know they have issues. You are absolutely 100% on top of every stumble, mis-thought, forgotten item, etc. Those with these diseases do not know they are forgetting, mis-speaking etc. My uncle had dementia in his 80's. Even when it first started he had no idea. I had a conversation with him and I knew something was wrong. He did not. This keeps me sane when I think about my situation. It should help you as well.
And do not Google. It is the devil for folks like us.
Have you tried Alprazolam? It is generic Xanax. I use it sporadically and it absolutely helps to calm the nerves and I can tell my thinking and concentration are better. It is not a complete fix but there is relief.

Let me know how you are making out.


Cheers


Chris