Extreme vCJD fear: my boyfriend and I need help

[SofiaCantara]

Hello everyone!

First of all, let me apologize beforehand for my potential english mistakes or misspellings... I live in Switzerland and speak french.

Since two months, my boyfriend has suffered from a wide variety of symptoms: dizziness, vertigo, nausea and weakness in his right arm. He went to three different doctors, who ran a lot of tests on him (brain RMI, blood test and even a lumbar puncture). All came back negative, except he was slightly low on phosphate, which, you'll agree, isn't that much of a problem.

Still, he started to get very nervous about this, as symptoms didn't pass and no doctors seems to care anymore. He started to do what he shouldn't have done, browsing Internet to find something.

Five days ago, he felt both of his legs very itchy and hot, and he started having trouble walking. We ended up in the emergency, where doctors ran a few test again, before letting him go. His legs were better.

Finally, three days ago, he went through five major panic attacks. He didn't have any trouble to breath and his heart wasn't beating too fast, but he felt everything was suddenly unreal, started to get scared of everyone in the room, including me. From this day, he is very anxious, and once or twice a day, go through a major panic attack again. He needs to be left alone on his computer or cell phone to find peace: each time he has to do something "social", even eating with me, he feels very anxious.

He is absolutely convinced since his first panic attack that he suffered from the variant of Creutzfeld Jakob disease. The trouble in his leg and those major panic attack, this anxiety... for him, it's exactly the symptom of it. He's now convinced he's going to die in the next few months, and can't stop crying each time he speaks to me, like he's going to leave forever soon.

Being not as hypochondriac as him, but still a bit lost and confused, could you please explain me, and so help me to explain him, he only suffered from anxiety and that those symptoms has nothing to do with vCJD?

Thank you very much!

Sofia

[axolotl]

Wow that's a really rare and specific thing to get scared of. You can put it out of your mind as an irrational fear. Nothing there is particularly unusual for we anxiety sufferers.

He does have a illness that needs treating, and that's health anxiety. Is he getting any help for that?

[SofiaCantara]

I know, it's irrationnal... i keep telling him that, but I also need to be sure that those symptoms has nothing to do with vCJD. Regarding anxiety treatments, hospital gave him light anxyolitics and sleeping pill. Anxyolitics work on him but he's convinced that it only hides the vCJD symptoms...

[axolotl]

CJD is an astronomically rare disease, which I believe hits the elderly most frequently.

Please don't take the following the wrong way because I was/am a health anxiety sufferer, but health anxiety is a weird illness that can paradoxically make you think the absolute worst about yourself, but also give you the supreme arrogance that your cack-handed Googling can make you spot things medical professionals can't.

It sounds like he has some deep-rooted faulty thinking that needs therapy to help him work his way out of.

[SofiaCantara]

The variant affect young people (around 30). It's even more rare than sporadic CJD. Anyway, I'll try to convince him to follow a therapy. Thank you axolotl!

[MyNameIsTerry]

When he panicked being around you it could have been DP/DR. That can make you feel like your own body isn't yours, the ground isn't there, loved ones aren't real people, etc and for obvious reasons that can be scary. It also tends to come when panic & anxiety are particularly high. So, this may reduce as is anxiety levels come down.

I suggest reading about that on here so you can understand if he's having trouble with that. There is a board specifically for those suffering it too on the Symptoms board which may help if so.

As far as his fear of vCJD until he's ruled out every single potential other disease/disorder, etc how can he determine this is what it is? We all know why, it's typical anxious thinking, but logically it can be challenged this way because he has seen some sometimes which may fit and the sufferer becomes tunnel-visioned. They start to apply Confirmation Bias from there to reinforce the fear being relevant which is how the fight or flight should normally work with a rational fear. Sadly, with irrational ones it's using the only process it knows against us.

Sufferers also forget doctors don't just look for symptoms that fit, they look for those that oppose the potential diagnosis. They've seen a load tests, I bet fairly general to cover all sorts of possibilities based on their experiences of such symptoms, so they would see something. You know this but to him he just can't shake the doubt and the additional of heightened feelings of anxiety/panic makes everything scary and you think you must be that one person things just happen too on a rare statistic.

Resolved that takes time & lots of work. He will need to consciously learn not to allow these thoughts to take over even though the panic he feels is very unpleasant. The subconscious will learn, as it always does through observation, that the current fear it has built it no longer relevant and things will change for him.

As for not wanting to be around you, I can understand that one very well as I went through that. Any change in an environment I was trying to control, because I feared my anxiety would worsen and I felt I couldn't cope already, and even loved ones felt being there felt like pressure on me, which means more anxiety. It may be something like that but given his panic and episode of possible DP/DR he may be associating that with you hence trying not to trigger it again. He will need to accept you being there but it's very soon after and some gentle coaxing may get him over that.

[SofiaCantara]

Thank you Terry, I made him read your answer... It serously helps him to ease his anxiety for a few hours, even if he just told me now that "most of the vCjd cases weren't diagnosed as so in first place, but only as anxiety condition". I guess he is in a vicious circle now, and that long psychotherapy is the only thing that can help him now.

[Imeleedi]

Hello everyone!

First of all, let me apologize beforehand for my potential english mistakes or misspellings... I live in Switzerland and speak french.

Since two months, my boyfriend has suffered from a wide variety of symptoms: dizziness, vertigo, nausea and weakness in his right arm. He went to three different doctors, who ran a lot of tests on him (brain RMI, blood test and even a lumbar puncture). All came back negative, except he was slightly low on phosphate, which, you'll agree, isn't that much of a problem.

Still, he started to get very nervous about this, as symptoms didn't pass and no doctors seems to care anymore. He started to do what he shouldn't have done, browsing Internet to find something.

Five days ago, he felt both of his legs very itchy and hot, and he started having trouble walking. We ended up in the emergency, where doctors ran a few test again, before letting him go. His legs were better.

Finally, three days ago, he went through five major panic attacks. He didn't have any trouble to breath and his heart wasn't beating too fast, but he felt everything was suddenly unreal, started to get scared of everyone in the room, including me. From this day, he is very anxious, and once or twice a day, go through a major panic attack again. He needs to be left alone on his computer or cell phone to find peace: each time he has to do something "social", even eating with me, he feels very anxious.

He is absolutely convinced since his first panic attack that he suffered from the variant of Creutzfeld Jakob disease. The trouble in his leg and those major panic attack, this anxiety... for him, it's exactly the symptom of it. He's now convinced he's going to die in the next few months, and can't stop crying each time he speaks to me, like he's going to leave forever soon.

Being not as hypochondriac as him, but still a bit lost and confused, could you please explain me, and so help me to explain him, he only suffered from anxiety and that those symptoms has nothing to do with vCJD?

Thank you very much!

Sofia

Hello, I feel like I am probably a good person to comment on this thread because I probably know more about VCJD, its origins, case variations and clinical presentation than anyone you are ever likely to encounter.

I will start off with the obvious (obvious but it needs to be said) assuming that your boyfriend didn't eat meat from the UK between the years 1980 and 1990, then the chances of him getting vCJD go from being around 1 in 65 million to being about 1 in 3-4 billion. If he did, then the chances are, anywhere between 1 in 65 million and 4 billion, depending on how much, what parts and how often. It sounds like he has not lived in the UK so automatically his chances go way down, France had its problems too of course as he probably knows, but on 1/5th of the scale so you can times that 65 million by 5 if hes from France.

So know you know the odds you also know how unbelievably unlikely it is; from that, lets get into him and his symptoms.

First, I won't be disingenuous, I can fully understand with some of those symptoms why he is scared of Vcjd. The burning and itching sensations in the lower limbs are an old red flag, combined with psychiatric symptoms. BUT and this is a big but, the abnormal sensory symptoms in Vcjd do NOT go away, and they do NOT get better. There is virtually no variance in the clinical literature in this. Once you get Vcjd symptoms, they just get worse and worse, they do not come and go, the cause is actual damage to the thalamus (a part of your brain that controls sensation amongst other things) once that damage is there, it stays until you lose the ability to feel or until your cognition is so impaired you no longer have the mental capacity to register pain.

The trouble walking you mention, (I'm sure he is panicking thinking his gait is starting to deteriorate) which happens in 99% of Vcjd cases, usually after a 4-6 month period. He will probably already know that, and it will be worrying him. What he won't likely know though, is how exactly Vcjd affects the gait. The answer is it widens it, like A LOT. Try standing with your feet shoulder width apart, then walk forwards, it looks like that. It is VERY noticeable and even a GP, let alone a neurologist would spot it immediately.

I could go into as much detail as you like if you want, but to cut it short, I can say, with some degree of knowledge about this very specific disease, that he doesn't have it. I'm not saying he has nothing, but please take comfort in knowing that it isn't that truly horrible, devastating disease and is much more likely a combination of stress, anxiety and maybe some minor neuro issues.

If it helps, here is my thread for when I was panicking about the same thing earlier this year, he may find it reassuring to watch a story unfold and see it turn out okay.

https://www.nomorepanic.co.uk/showthread.php?t=212095