Intense anxiety and fear from Variant Creutzfeldt-Jakob Disease (vCJD)

[Laurent]

Hello everyone ,

I'm new around here and this is my second post on these forums.

I will present myself quickly : 25 years old male, living in Switzerland, Geneva, where i was born in 1990. I'm sorry if my english is a bit rough, my native language is french .

I was always a pretty anxious child and teenager, with an acute phase in 2005-2008 when i was 15-18 years old.

Back then the anxiety mainly took the appearance of emetophobia (fear of vomiting, fear of losing control) and it caused me to lose a lot of weight to the point of having my vital prognostic engaged, to develop obsessive compulsive disorder like excessive hand washing, and fear of food and alimentation in general (because food = vomit material, right ?).

After being hospitalized for these problems i hopefully met a great specialist and thank to his aid and counseling i managed to slowly overcome these fears, even if it took a considerable amount of time.

But now i feel i'm back at the starting point.

Recently, the 26th may, i had an acute vertigo attack. Like the room was spinning around me. The acute vertigo went away quickly, but since then i feel dizzy all the time, like i'm swaying left and right (not brutally, it's more of a subtle feeling). I was always a pretty avid user of computers, it's also my job, and now i can hardly stay in front of a screen, it "sways" too much and my eyes gets tired very quickly.

Now, a little bit more than a month later i still have that sensation. I've seen countless specialists, even some very renowned in the "mysterious" world of vertigo and unbalance, did countless tests (even very specific and recent ones, with virtual reality goggles on my eyes and all that), cerebral MRI scan, blood tests, ophthalmic tests... and they all came back normal. Apparently i'm "structurally" healthy. There's nothing pointing towards a chronic disease or a real deficit of the inner ear or the brain. For the specialists it's mostly likely psychological with a "benign" physical cause that probably started it all.

But still, since that event my anxiety is through the roof. I had multiple panic attacks, initially caused by the thoughts of having to be dizzy, tired and depersonalized for the rest of my life. I lost a lot of weight, too.

Then the anxiety calmed itself a little bit (not the dizziness or the derealization though, they were always present since the event), until an ophthalmologist told me that he saw a little bit of "skew deviation" in my eyes. Needless to say i opened Google to look what "skew deviation" was, and i fell on a page talking about Variant Creutzfeldt-Jakob Disease (vCJD) as a result.

And now here i am.

I am absolutely convinced that i suffer from the early stages of the disease. Even more when i saw that the early symptoms are mostly psychological (anxiety, depression and dizziness) and most of the time wrongly labeled by specialists as a "simple" psychological problem. I'm anxious beyond anything i ever experienced. I'm expecting the worse, i'm already have mental images of my parents crying over my body in a vegetative state, i'm on the fence for every symptom that would reinforce that diagnosis.

I just don't know how to get out of this anxiety loop anymore. I just don't know how to convince myself i don't suffer from this disease. How would i know anyway ? There's no real diagnosis and it can stay dormant for years until it manifests itself. Switzerland was pretty safe from it and i never went in the UK in my whole life, but i frequently went in Italy (1995-2005) when i was a kid because my grandparents live back there so...

I can't accept that i'm going to die in a few months. To the stage when anytime i do something or say something i hear a little voice saying "profit of what you said / what you did until you still can" and causes massive anxiety.

[DisgracedAngel]

Around the same time as you, I had the sudden onset if vertigo. I never happened before and it scared me. I ended up in hospital for them to tell me I had a sinus infection. The next few days were still awful so I went to my doctor who said I had labyrinthitis, probably as a result of the sinusitis. I has given anti dizziness tablets and VRT exercises, and told it could take 3-10 weeks to overcome! I have also found that labyrinthitis can have lasting effects beyond that if there is damage to the very inner ear. I know you said you had all of this checked but have you been to an Ear, nose and throat specialist?

Luckily mine went away in the three weeks although I still need to have a steroid nose spray because doctor said this will be a long term problem because I apparently have a crooked nose lol But I was prepared to demand to see an ent specialist if it didn't.

[Laurent]

Around the same time as you, I had the sudden onset if vertigo. I never happened before and it scared me. I ended up in hospital for them to tell me I had a sinus infection. The next few days were still awful so I went to my doctor who said I had labyrinthitis, probably as a result of the sinusitis. I has given anti dizziness tablets and VRT exercises, and told it could take 3-10 weeks to overcome! I have also found that labyrinthitis can have lasting effects beyond that if there is damage to the very inner ear. I know you said you had all of this checked but have you been to an Ear, nose and throat specialist?

Luckily mine went away in the three weeks although I still need to have a steroid nose spray because doctor said this will be a long term problem because I apparently have a crooked nose lol But I was prepared to demand to see an ent specialist if it didn't.

Hello.

I know you said you had all of this checked but have you been to an Ear, nose and throat specialist?

Yes i did. Three times, three different persons (yeah when i want to have answers i do anything, even stupid things). They all said i was fine, and it was certainly not a vestibular neuronitis or a labyrinthitis. And i trust them because the vertigo attack wasn't extremely intense nor long (10 seconds is way too short to be labeled as a neuronitis or labyrinthitis) and i didn't had any kind of infection prior to that.

As i said i don't have vertigo (room spinning etc) since the initial event but i do feel dizzy, like nothing is really stable or straight , and i have troubles concentrating because of that. Apparently it's a problem of perception, not actual balance, since i'm able to walk, exercise, or run without issues.

Hence my fear of Creutzfeldt-Jakob (mad cow). All the symptoms i have can be linked to the early stages of Creutzfeldt-Jakob. Maybe that sensation of dizziness is an early neurological symptom ? I'm terrified. Not being sure of anything is killing me.

The worst part is that the crippling anxiety isn't always present. It's fluctuant. Like a wave if you want. And i'm convinced it's also a typical Creutzfeldt-Jakob symptom because it doesn't make any sense. In such a case my anxiety should be permanent, not fluctuant like that, it must be neurological.

---------- Post added at 14:44 ---------- Previous post was at 10:58 ----------

Already told my relatives to be ready to see me gone in a few months. They laughed at my face. I feel i start to annoy them with my problems.

[Fishmanpa]

When I see posts like this that are about an extremely rare disease, I know Dr. Google is involved. When I say extremely rare, it's like the brain eating amoeba, rabies and other illnesses and diseases that if indeed someone had one, it would make the headlines.

In the US, fewer than 1000 cases of vCJD a year are reported and that's out of a population of close to 320 million! That's a .000003125% chance. In other countries, the stats are close to the same.

With you being cleared by several medical professionals and scientific medical testing as well as your presence on this forum, it all points to a non physical issue. Are you getting help for your anxiety?

Positive thoughts

[Laurent]

When I see posts like this that are about an extremely rare disease, I know Dr. Google is involved. When I say extremely rare, it's like the brain eating amoeba, rabies and other illnesses and diseases that if indeed someone had one, it would make the headlines.

In the US, fewer than 1000 cases of vCJD a year are reported and that's out of a population of close to 320 million! That's a .000003125% chance. In other countries, the stats are close to the same.

With you being cleared by several medical professionals and scientific medical testing as well as your presence on this forum, it all points to a non physical issue. Are you getting help for your anxiety?

Positive thoughts

Thanks you for your thoughts Fishmanpa,

Yes, Dr.Google is obviously involved. That's the downsides of being "connected" all the time.

I will soon start a therapy for my anxiety. It took over one month between finding someone and getting an appointment.

I'm aware that the chances of getting such a disease are infinitely small, but still, the fact that there's a chance, no matter how small it is, is already enough for me.

As for being "cleared", well there's no definite diagnostic for vCJD except post-mortem. Our fellow Dr.Google gave me enough examples of cases of vCJD (in fact i've read pretty much everything Google had to offer about it) that went undiagnosed until the severe symptoms appeared because the MRI scan and various "standard" tests were somewhat normal.

It's the fact that an early vCJD is often diagnosed as a depression / panic attack / general anxiety that chills my bones day and night. And that's part of the reason why i can't accept that i might suffer from "just" anxiety, because what would happen if i start believing that and, in the end, i was indeed suffering from vCJD ? I would be be devastated beyond imagination, literally and figuratively.

Besides how do i know if i'm anxious from having vCJD or it's having vCJD that makes me anxious ? I'm expecting the worse, who knows in which state i will be in a month.

[countrygirl]

Is your neck aching! I always come into any post about vertigo with this question as any tension in the neck muscles from whatever cause even anxiety can cause attacks of vertigo and persistant dizziness. I know as I have had this for 30 years due to structural neck problems but it applies to anyone whose neck muscles are just tense from say sitting at a computer all day.
Your neck muscles and joints send messages to your inner ear, plus you have a sypathetic nerve ganglia running down your neck that affects balance. ( Neuro and physio information).
I know from long experience that these symptoms cause huge anxiety because so many nasty things can cause them. I was told 30 years ago that my problems were from my neck but didn't believe it and had every test and then done again over and over to rule out brain tumour etc.

So if you can try and limit your computer use or take lots of short breaks and don't stare at the screen and relax those shoulders and neck!

[Laurent]

Is your neck aching! I always come into any post about vertigo with this question as any tension in the neck muscles from whatever cause even anxiety can cause attacks of vertigo and persistant dizziness. I know as I have had this for 30 years due to structural neck problems but it applies to anyone whose neck muscles are just tense from say sitting at a computer all day.
Your neck muscles and joints send messages to your inner ear, plus you have a sypathetic nerve ganglia running down your neck that affects balance. ( Neuro and physio information).
I know from long experience that these symptoms cause huge anxiety because so many nasty things can cause them. I was told 30 years ago that my problems were from my neck but didn't believe it and had every test and then done again over and over to rule out brain tumour etc.

So if you can try and limit your computer use or take lots of short breaks and don't stare at the screen and relax those shoulders and neck!

Hello ! Depends what you mean by aching. My neck doesn't "hurt" per say, but my upper back does when i'm sitting in a bad chair or when i walk too much. I do have some difficulties to swallow time to time (like it takes longer to "pass"), though. Which is another symptom that we find in vCDJ. Great.

[Fishmanpa]

Hello ! Depends what you mean by aching. My neck doesn't "hurt" per say, but my upper back does when i'm sitting in a bad chair or when i walk too much. I do have some difficulties to swallow time to time (like it takes longer to "pass"), though. Which is another symptom that we find in vCDJ. Great.

It's also a very common symptom of anxiety! I'd bet my next year's salary you're not dealing with vCJD

Positive thoughts

[Laurent]

It's also a very common symptom of anxiety! I'd bet my next year's salary you're not dealing with vCJD

Positive thoughts

Thank you Fishmanpa,

I know that this is a probable sign of my anxiety, but is my anxiety just anxiety or anxiety resulting from the disease ? That's the part i have difficulties to deal with. Besides i still don't have any appetite, when i eat i feel full very quickly, and as a result i'm losing weight.

[DisgracedAngel]

Anxiety can cause a lot more problems than you think. I'd say your anxiety is taking over which is why you're feeling these things. Anxiety caused by the one and only Dr Google.

When I am at high anxiety, I tend to lose my appetite straight away. I've hardly eaten the last few days myself because of it.