View Full Version : Prion diseases rearing ugly head again
Hi guys, this is my first post here but I was a biggish poster on anxiety zone, which seems to have vanished into thin air sadly, as a lot of the old threads and people I knew on there were big helps back in darker times.
Anyway, I'm here now, so hello �� :D I was really helpful on the old forums for people with brain tumour fears because I absolutely exhausted every medical journal ever made about them during a really bad bout so if I can I'll help people with that here too as and where I possibly can.
Anyway, after 2 years HA free, I recently started waking up in the morning with pins and needles in my hands, it got me worried after it continued for a week, then I developed painfully cold feet, every minute of every day. It's almost like a cold burning pain in both feet, really bad with shoes on, sometimes can even feel it right up my leg. Then the shooting pains started. All this over just 3 weeks. My gp referred me for nerve tests and I'm pretty panicked. She seems to think it is neurogical..
So in my quest for answers (bad idea) I ran into an old foe, vcjd. Being from the UK, and just the right age for it (27). I remember how nerve and sensory symptoms were the first signs at early onset.
To make things worse, my big reassuring factor during my last vcjd scare was that there were no cases in the last 3 years. Implying it died out. However, I just checked and it's actually ****ing back. I can't believe it... Someone died of it in the UK last year and more are expected to come as it hits another gene type. I'm rocked guys. Tell me I'm being am idiot. :weep:
tryingtosurvive1
31-12-17, 08:06
I'm not sure why you are having the tinglies, but prion diseases are RIDICULOUSLY rare. Plus you'd be having central nervous system issues that were really really obvious.
I'm not sure why you are having the tinglies, but prion diseases are RIDICULOUSLY rare. Plus you'd be having central nervous system issues that were really really obvious.
I know its super rare, but so are peripheral nerve issues like this in a 27 year old. I don't have diabetes or anything from the blood tests that could explain it so i'm having to look rarer and rarer to get an explanation :weep:
A couple of years ago, just after Christmas, I started getting tingles in my hands, face, lips and legs. It started off as a slight tingle, but the more I got upset by it the worse it got. By the end I'd sit at night and my legs would feel like they're on fire.
I went to the GP, who sent me to see a neurologist. I had a physical exam, blood tests, MRI and nerve conduction tests. All throughout it was made clear they were precautionary, and the neurologist thought anything nasty was unlikely.
The results were all clear, bar a very slight B12 deficiency that could be contributing, but the opinion of the neurologist was it was mainly anxiety. Once dosed up with B12 injections, and more importantly when I stopped worrying, I was fine. It occasionally flares up but I know to ignore it and it goes away.
My point it there can be very common, benign, mundane reasons for these kind of things and there's no need to jump to the super-rare. Also the main culprit is likely to be anxiety - something you know you already have.
Thanks for the post axo; I know that anxiety will be playing a role in this. It's just that usually it takes months of constant stress before I start seeing scary symptoms emerge when I'm having a bout. The fact that this stuff just went from 0-60 in just a few weeks has off set me a little.
I dont know why I always seem to go for the super rare. I guess the prospect of a dillerating illness like plain old MS or even ALS just isn't scary enough for me.. :unsure:
Thanks for the post axo; I know that anxiety will be playing a role in this. It's just that usually it takes months of constant stress before I start seeing scary symptoms emerge when I'm having a bout. The fact that this stuff just went from 0-60 in just a few weeks has off set me a little.
I dont know why I always seem to go for the super rare. I guess the prospect of a dillerating illness like plain old MS or even ALS just isn't scary enough for me.. :unsure:
The fact it doesn't make sense it what makes anxiety a disorder. Don't beat yourself up over that.
You have to stop reading up on rare diseases and looking out for the signs of things you almost certainly will never have. It's hard, I know.
And you need to work hard and get professional help to treat the illness you do have and shouldn't be underestimated - anxiety.
---------- Post added at 13:44 ---------- Previous post was at 13:42 ----------
Oh, and the thing that freaked me out when I got the tingles was I didn't even feel particularly stressed at the time. But we don't always know what's ticking away at the backs of our minds and causing these things.
The fact it doesn't make sense it what makes anxiety a disorder. Don't beat yourself up over that.
You have to stop reading up on rare diseases and looking out for the signs of things you almost certainly will never have. It's hard, I know.
And you need to work hard and get professional help to treat the illness you do have and shouldn't be underestimated - anxiety.
---------- Post added at 13:44 ---------- Previous post was at 13:42 ----------
Oh, and the thing that freaked me out when I got the tingles was I didn't even feel particularly stressed at the time. But we don't always know what's ticking away at the backs of our minds and causing these things.
You're right.
I said this morning that I will absolutely not look up prions again in Google this morning and do far I haven't. Came close a few times but remained resilient so far.
Hard though because my feet are particularly freezing today and causing more discomfort than usual. My right eye keeps tearing up too and has been for a few days now. Refusing to Google that one at all.
tryingtosurvive1
03-01-18, 02:12
Seriously, prion diseases have extreme central nervous system symptoms that develop quickly. Your googling should have revealed this. As far as what else it could be, the OP gives some suggestions.
Well one month on and things have only got worse.
I've had a burning sensation in both legs now as well as persistently cold feet since mid December now along with some strange pulling sensation in my right eye (not a twitch) really bad insomnia too. All of these are major dead ringer symptoms for vcjd.
I've now read every piece of literature written on it, every case study, every medical journal even those you have to pay for. Sod wasting money on that, want to leave every penny I own to my family. There's a big compensation package available too for families of people killed by vcjd. So these guys who diagnose me better not try to palm this off as normal cjd and screw my family out of a quarter mill.
I just want to post here to let everyone know. That a 179th British death will occur from vcjd (they may diagnose it as regular cjd but it isn't) this year. It will be a 28 year old male from the UK. I want it out there for all the future searchers that I managed to accurately predict I got a disease that is like 1 in 60 million to get just 3 weeks into clinical onset. I'm quite proud of that.
All of your symptoms could also be explained by anxiety, which is far more common than these prion diseases.
Plus the vast majority of your tingling occurs after you wake up, which probably means that you sleep cutting off the circulation to your appendages. I do this as well. It's very common.
Your eye twitch is most likely caused by stress.
All of your symptoms could also be explained by anxiety, which is far more common than these prion diseases.
Plus the vast majority of your tingling occurs after you wake up, which probably means that you sleep cutting off the circulation to your appendages. I do this as well. It's very common.
Your eye twitch is most likely caused by stress.
Truth be told mate. Chances are that the pins and needles were just a byproduct of sleeping position. The pins and needles you get in vcjd comes and stays put. It doesn't fade away. Just a weird coincidence or maybe due to the insomnia/anxiety affect my sleep position rather than a direct result of brain sponging.
The burning legs upon touch, cold feet and eye sensation is most definitely constant though and point right in the scary direction.
I have gotten burning legs, cold feet and eye twitch all because of stress and anxiety.
Since the year or so when we've last spoken, what have you done to treat your anxiety?
I have gotten burning legs, cold feet and eye twitch all because of stress and anxiety.
Since the year or so when we've last spoken, what have you done to treat your anxiety?
Was only a month ago, unless you are making a new year joke there :roflmao:
And tried to get my doc to give me some atarax for sleep and calming measures but they won't give me any. This is the UK, they literally have you in and out the door in 5 minutes at gp appointments, they are useless.
Yes, new years joke there ;)
Maybe it's time to talk to a therapist? Or psychiatrist? Whomever gives therapy and prescribes meds in the UK?
Yes, new years joke there ;)
Maybe it's time to talk to a therapist? Or psychiatrist? Whomever gives therapy and prescribes meds in the UK?
6 month wait to see one here.
By then I'll either be in an akinetic state of mutism and totally bedbound or totally fine and looking back at this period as just a big nightmare.
Probably fine and looking back on it as a nightmare...just like you did on AZ.
However, if you keep with it, and get help, then you may not keep having HA flare-ups.
Probably fine and looking back on it as a nightmare...just like you did on AZ.
However, if you keep with it, and get help, then you may not keep having HA flare-ups.
I so wish I could look back at old threads on there. Really think it would help me to see just how I was feeling back then and see it all turn out OK. Why did it just disappear? I don't get it :weep:
I do know though that the stuff I'm feeling this time is way more physical than last time. Like genuine pain and sensations, last time it was more easily explainable stuff
Hi it could be poor circulation I have had pins and needles on and off for a few years, Can I ask do you smoke atall? And good work on resisting Dr Google he is useless too ;) Yeah know what you mean in and out in 5 mins simply not good enough same with trying to get MH problems sorted does takes months to get on the ladder but you can Mind which is in most uk cities or mental health services as Well Being Pretty sure this is your HA here convincing you that you have serious physical condition when you haven't :) ATB
Hi it could be poor circulation I have had pins and needles on and off for a few years, Can I ask do you smoke atall? And good work on resisting Dr Google he is useless too ;) Yeah know what you mean in and out in 5 mins simply not good enough same with trying to get MH problems sorted does takes months to get on the ladder but you can Mind which is in most uk cities or mental health services as Well Being Pretty sure this is your HA here convincing you that you have serious physical condition when you haven't :) ATB
Nah, circulation issues have been ruled out via testing. Bloods, nerve conduction tests and circulation tests all come back normal which is NOT good.
I dont mind dying a horrible, painful and traumatic death though if it means I can leave my family well off. I just worry about the effect it will have on them watching it all unfold.
I so wish I could look back at old threads on there. Really think it would help me to see just how I was feeling back then and see it all turn out OK. Why did it just disappear? I don't get it :weep:
I do know though that the stuff I'm feeling this time is way more physical than last time. Like genuine pain and sensations, last time it was more easily explainable stuff You maybe able to check via the way back machine
website I am sure that's what it's called simply type the web address in and choose the year you want to look at and away you go :) Let us know how you get on mate. ATB
The person who owned AZ decided not to renew the website. It had kind've gotten overrun with health anxiety posts and there was a lot of in-fighting as to the best way to help these people.
That's why I believe you'll see the mods on here taking such active measures to regulate the health anxiety forum. We definitely don't want to see what happened to AZ happen here.
Nah, circulation issues have been ruled out via testing. Bloods, nerve conduction tests and circulation tests all come back normal which is NOT good.
I dont mind dying a horrible, painful and traumatic death though if it means I can leave my family well off. I just worry about the effect it will have on them watching it all unfold. Not sure why those test results are making you say not good, and seriously you don't mind dying a painful and traumatic death it as though you almost wishing to happen you are young and a fit guy that has a whole good life ahead of him I guarantee you ain't got VCJD it's your constant reading up on it from medical journals etc which isn't helping! ATB
You maybe able to check via the way back machine
website I am sure that's what it's called simply type the web address in and choose the year you want to look at and away you go :) Let us know how you get on mate. ATB
Won't let me do it on my phone for some reason but will definitely try that on laptop, cheers :yesyes:
And Antzy, that doesn't surprise me at all, I remember the HA board on there was at least 10x more posts on it than the other sub forums. Still a shame though, there was a good community of knowledgeable people on there during my 2015 time on it.
Well, a lot of us have come on here. I'd say the people that were more in favor of the "swift kick in the ass" have come here. The "coddlers" went to another site.
Not sure why those test results are making you say not good, and seriously you don't mind dying a painful and traumatic death it as though you almost wishing to happen you are young and a fit guy that has a whole good life ahead of him I guarantee you ain't got VCJD it's your constant reading up on it from medical journals etc which isn't helping! ATB
Not wishing for it, but way I fugure, I could get a gilomablastoma, die a horrible death like thousands do every year and my family would get nothing. At least with vcjd they'd get 250,000+ grand. So you know, gotta look on the bright side of things, right?
---------- Post added at 20:33 ---------- Previous post was at 20:28 ----------
Well, a lot of us have come on here. I'd say the people that were more in favor of the "swift kick in the ass" have come here. The "coddlers" went to another site.
Hahaha okay.
Well I'm definitely not a coddler. Probably more swift kick if any but to be honest I just like to have a place I can say what's on my mind really. I spare my family these type of dark thoughts. Feel it's my duty to take it all and suffer in silence so outlets like this full of people who sort of understand you can really help sometimes.
So your GP is only giving you a 5 minute appointment for suspected vcjd? I presume you tell him/her about your self diagnosis?
Won't let me do it on my phone for some reason but will definitely try that on laptop, cheers :yesyes:
And Antzy, that doesn't surprise me at all, I remember the HA board on there was at least 10x more posts on it than the other sub forums. Still a shame though, there was a good community of knowledgeable people on there during my 2015 time on it. Ahh ok let us know if it works on your lap top think that's what is called any how :)
Yeah, I think that's why many of us remain on here. Although I have a supportive family, none of them truly "get it" because they don't suffer from anxiety.
The other big reason I come on here is because when I get someone else the "swift kick in the ass", I'm reinforcing it for myself.
So your GP is only giving you a 5 minute appointment for suspected vcjd? I presume you tell him/her about your self diagnosis?
That's the NHS for you. :roflmao:
That's the NHS for you. :roflmao:
But have you told the doctor what you think you've got?
Not wishing for it, but way I fugure, I could get a gilomablastoma, die a horrible death like thousands do every year and my family would get nothing. At least with vcjd they'd get 250,000+ grand. So you know, gotta look on the bright side of things, right?
---------- Post added at 20:33 ---------- Previous post was at 20:28 ----------
Hahaha okay.
Well I'm definitely not a coddler. Probably more swift kick if any but to be honest I just like to have a place I can say what's on my mind really. I spare my family these type of dark thoughts. Feel it's my duty to take it all and suffer in silence so outlets like this full of people who sort of understand you can really help sometimes. Yeah I get what you are saying but don't jump the gun mate well you wont get coddled here well not off the seasoned members ha ha a swift kick a few times and you will be sorted:roflmao: ATB
But have you told the doctor what you think you've got?
Mentioned it in a jokey manner so he wouldn't think I'm too crazy on my first visit. Turns out he wrote it down and it's on my medical record now that I suggested cjd. So when I went in last week to a different doc he saw that and just pretty much kicked me out.
Good thing is though with it being in my gp notes, if I actually do have it I'll really impress some neuropathologists reviewing my case in about 12 months time :roflmao:
Well you're certainly determined to have it in a "told ya so" way!
Why not settle for something less "controversial"?
Well you're certainly determined to have it in a "told ya so" way!
Why not settle for something less "controversial"?
Honestly, Im not even an "I told you so" type of guy believe it or not.
I guess that's just the characteristic vcjd personality change bringing out the worst in me (kidding) :D
Despite the jokes I suspect that you have terrified yourself reading up on this condition. It's no joke when you are totally immersed in your fears.
The chances of this being vcjd are practically zero not that you will be convinced by what we say on here. That's the nature of the HA beast.
Despite the jokes I suspect that you have terrified yourself reading up on this condition. It's no joke when you are totally immersed in your fears.
The chances of this being vcjd are practically zero not that you will be convinced by what we say on here. That's the nature of the HA beast.
2 cases diagnosed in the UK since 2012. Good chance a few were misdiagnosed but give or take we are talking a 1 in 60 million chance in any one year.
Odds go up when you are the right age, with anxiety and sensory symptoms and resided within the UK during 1985-1996 and tests rule out more common causes.
Truth be told. Numerically, I have no idea where I stand.
But mentally you are convinced that you have it? Or would you consider any other diagnoses?
But mentally you are convinced that you have it? Or would you consider any other diagnoses?
Sure I would if it explained what was going on with me. Trouble is the one that has ticked the most boxes to my situation so far is variant cjd. That's not even me being dramatic it really is astonishing how well it matches my symptoms.
This is even rarer than rabies and the brain eating amoeba! Being that it usually kills within a few months, the fact you're still alive, writing coherently and on an anxiety forum speaks volumes.
Positive thoughts
This is even rarer than rabies and the brain eating amoeba! Being that it usually kills within a few months, the fact you're still alive, writing coherently and on an anxiety forum speaks volumes.
Positive thoughts
Unfortunately vcjd and cjd are pathologically very different. Vcjd duration is 14 months and symptoms are usually sensory or depressive in nature for first 4-5 months. After that the more typical cjd signs kick in.
Also, while it is rare. The situation in the UK is different, literally almost everyone born between 1980 and 1996 is likely to have eaten infected BSE meat. It only manifests in a small amount of people but the level of exposure here compared to anywhere else in the world is incomparable
Good job I didn't read up on this when I was having "neuro" symptoms a few years ago. You are on an anxiety forum and you know how anxiety symptoms can present in weird and wonderful ways. I understand how difficult it is to shift a perceived diagnosis once you have convinced yourself you have it but to save yourself weeks and months of torture I think you have to admit that you need some professional therapy for HA to help you cope?
I think you have to admit that you need some professional therapy for HA to help you cope
^^^THAT^^^
Positive thoughts
Good job I didn't read up on this when I was having "neuro" symptoms a few years ago. You are on an anxiety forum and you know how anxiety symptoms can present in weird and wonderful ways. I understand how difficult it is to shift a perceived diagnosis once you have convinced yourself you have it but to save yourself weeks and months of torture I think you have to admit that you need some professional therapy for HA to help you cope?
Nah I know it's possible anxiety is causing this. It's also possible alcohol is playing a part as the burning pain seems worse a few days after I drink so it's not like thee is no other explanations at all.
I want to treat it for HA but I figure if I just hold out a month or two. I'll get my answer either way. Until then you lot are all I have v:yesyes:
That's why we're saying to get some help. That way you won't have to keep repeating this cycle. I know by the time you get a therapy appointment your flare-up will have passed, but therapy can prevent the next flare-up.
MyNameIsTerry
12-02-18, 01:42
The person who owned AZ decided not to renew the website. It had kind've gotten overrun with health anxiety posts and there was a lot of in-fighting as to the best way to help these people.
That's why I believe you'll see the mods on here taking such active measures to regulate the health anxiety forum. We definitely don't want to see what happened to AZ happen here.
Don't worry, Vee, the same discussions about the HA board were going on when I joined. A number of the older members left because they wanted to work on support rather than symptoms.
As for the infighting you are seeing on NMP, it's all tame on here now. It's been much worse.
It's really nothing new on here. When older members talk of the old days they must mean before I joined because the issues with repetitive posters have been going on for years.
Other than changing the membership, it will remain a HA forum.
---------- Post added at 01:42 ---------- Previous post was at 01:34 ----------
Was only a month ago, unless you are making a new year joke there :roflmao:
And tried to get my doc to give me some atarax for sleep and calming measures but they won't give me any. This is the UK, they literally have you in and out the door in 5 minutes at gp appointments, they are useless.
6 month wait to see one here.
By then I'll either be in an akinetic state of mutism and totally bedbound or totally fine and looking back at this period as just a big nightmare.
It's the same for all of us (regional differences aside) so why not get yourself in the queue?
It's the same at my GP surgery yet I've tried a couple of meds and been through Guided Self Help and High Intensity Therapy, both of which are now self referrals rather than through a GP.
Like Vee says, it won't go away. It may abate and then turn up another time but therapy/meds can aim to prevent flare ups or reduce them. Not treating the HA will only mean it either solves itself or just repeats.
Do you research as fact finding for counter evidence to your fear? It doesn't sound like it from what you have written here. It sounds more like the obsessive attempts at validation of a fear and with that is going to come various forms of bias. Not forgetting medical journals are beyond our expertise so we are limited in what we can extract from them.
What's your anxiety disorder diagnosis? Do you understand your obsessive behaviour and your compulsive activities? If so, how do you plan to work on them?
Well I've had the worst night sleep imaginable tonight. Much worse than usual. Started off waking up with some sort of coughing attack after an hour (I don't even have a cough) then I kept waking up because just before I drifted off I kept hearing some loud bang in my head and it jolted me back awake. This definitely isn't normal...
MyNameIsTerry
12-02-18, 05:41
Exploding bangs and jolts which are all common sleep phenomena experienced in the Hypnagogic & Hypnopompic sleep stages which are known to be made worse by anxiety?
So, actually, yes it's completely normal.
You haven't answered Terry's question..
Nah I know it's possible anxiety is causing this. It's also possible alcohol is playing a part as the burning pain seems worse a few days after I drink so it's not like thee is no other explanations at all.
I want to treat it for HA but I figure if I just hold out a month or two. I'll get my answer either way. Until then you lot are all I have v:yesyes: Well that's good so like some one else said get your self in the Q for treatment of your HA and the 'Told Ya So Gang' will be ready too Well that's nice of you to say so mate we do our best to help:yesyes: ATB
This is daft...What a ridiculous thing to be discussing in this manner.
Repicked up my old medication today after not needing it for two years. Last night was the last straw for me. Went in to my GPS and just told them straight up I ain't doing too good and want to see if it helps me again.
Going to start the atarax tonight and fluoxotine tomorrow.
Let's hope it helps.
Good job for addressing the real issue Imeleedi :yesyes:
Positive thoughts
MyNameIsTerry
12-02-18, 15:49
It's good that you are taking action.
How are you addressing your thinking patterns, obsessive & compulsive behaviours, etc? Or how do you plan too?
Yeah brilliant Imeleedl it's good to see you are proactive on this :) ATB
Looking at those lists of side effects brings back some daunting memories.
I had a tough time with side effects last time around, do any of you guys know it I can cut my pill in half or something for the first week to lessen them? Anyone on here ever done that?
Well some do and some don't, but really any doseage changes should be via your Gp what size are they mate? ATB
Definitely a good idea in view of your already heightened anxiety.
They are 20mg.
I'm fine with the Atarax, had that before and it was seamless, I do remember having a hard time with the fluoxetine though. First 2 weeks was hell. Think I will definitely start with half in the mornings so hopefully it limits the insomnia, because the last thing I need right now is more of that.
Yeah I guess it exactly the same as when you wean off these meds gradually, so should be fine let us know how you get on ;) ATB
Fluoxetine is an activating drug so start slowly and cautiously.
Yeah I guess it exactly the same as when you wean off these meds gradually, so should be fine let us know how you get on ;) ATB
Will do mate, cheers.
---------- Post added at 18:28 ---------- Previous post was at 18:27 ----------
Fluoxetine is an activating drug so start slowly and cautiously.
Yeah, okay. I'll definitely ease into it.
Last thing I need right now is more stressful symptoms. It made my anxiety spike too last time if I remember right for the first week or so but maybe it's just because 20mg was too much too fast for me.
Sounds like it was. You've done the best thing possible by recognising that you need medical help to manage your anxiety and control this spiral. I hope you have a better night's sleep with the atarax. That stuff certainly knocks you out!
Sounds like it was. You've done the best thing possible by recognising that you need medical help to manage your anxiety and control this spiral. I hope you have a better night's sleep with the atarax. That stuff certainly knocks you out!
I hope so too.
I still remember the feeling from last time. I was in this horrible dark hole, and my sleep was getting worse and worse up until a point I felt I was going to crack. I was on 45 minutes max per night, the rest was jolting, vivid scary dreams and seeing weird stuff all night every night. I was terrified I had sporadic fatal insomina, and the disease is accelerated by taking sleeping tablets incidentally; so I was utterly terrified of taking them in case they made me worse.
I slept better that night than I had in 3 long, bad months.
Thats when the recovery really began.
OK so two nights in and things have got worse not better.
So much for that improvement
In terms of sleep or everything?
In terms of sleep or everything?
Both really, I kept waking up with hot swears and my legs were in terrible pain from the prickling/burning
Hey so hows things today mate, sleeping better I hope? ATB
Hey so hows things today mate, sleeping better I hope? ATB
Nothing has improved physically, still have all the same sensations and sleep issues.
My mood has improved a little though, I don't look up cjd stuff hardly at all anymore. Partly because there isn't anything out there I haven't already read and partly because I'm slowly starting to believe it may not be cjd.
I do honestly think there is some physical ailment as my symptoms are so persistent and occasionally very painful. But I'm slowly starting to accept it might not be one of the rarest and most brutal diseases in the world. Which is sort of progress, right?
Have to say the last couple of days have been pretty dark..
The sleep has gotten worse, the burning/prickling pain in my thighs is unrelenting. I'm getting about 1-2 hours sleep a night and my mood has plummeted.
The odd sensations in the face and throat are still there but don't seem to be getting worse, if not better.
The cold feet are incredibly painful.
To top it all off, the docs think my mum has lung cancer too. Shes coughing up blood, and has been sent for an emergency consultant appointment.
I just keep thinking of my poor dad having to cope in 12 months time with a dying wife and a son in a vegetative state.
Update: 4 months into whatever this is now. My right hand is now totally numb all the time. However the burning in the legs seems to be less prominent, despite not being totally gone.
Typically speaking this is the money point with variant cjd, the 4-6 month period is where cognitive decline, ataxia, and slurred speech begin. If I get through these next two months with none of those developing, chances are I'm home free and it's something else causing all my symptoms, with can only be a good thing.
Kingdawson
21-04-18, 15:25
Update: 4 months into whatever this is now. My right hand is now totally numb all the time. However the burning in the legs seems to be less prominent, despite not being totally gone.
Typically speaking this is the money point with variant cjd, the 4-6 month period is where cognitive decline, ataxia, and slurred speech begin. If I get through these next two months with none of those developing, chances are I'm home free and it's something else causing all my symptoms, with can only be a good thing.
This is no way to live life mate.
rfarrell86
23-04-18, 20:05
Imeleedi, sorry to hear what you are going through -- I also have convinced myself i've had a brain tumor, stomach cancer, esophageal cancer, pretty much any type of cancer,-- and the more scary ones -- ALS and fatal insomnia (still trying to get over this one) -- i think we can take heart in having gone through this multiple times -- i know its easier said then done-- what are the chances -- WE KNOW WE have Health anxiety so most likely its another phase of HA -- OR do we have super rare prion diseases that (i think) everyone who has posted similar concerns has yet to get (100s of posts ) . I too am fearing prion disease as i have not slept well in 3 weeks and when i do i feel i go directly to a weird dream state-- i think we will be fine. Health anxiety feels so real when its not.
Imeleedi, sorry to hear what you are going through -- I also have convinced myself i've had a brain tumor, stomach cancer, esophageal cancer, pretty much any type of cancer,-- and the more scary ones -- ALS and fatal insomnia (still trying to get over this one) -- i think we can take heart in having gone through this multiple times -- i know its easier said then done-- what are the chances -- WE KNOW WE have Health anxiety so most likely its another phase of HA -- OR do we have super rare prion diseases that (i think) everyone who has posted similar concerns has yet to get (100s of posts ) . I too am fearing prion disease as i have not slept well in 3 weeks and when i do i feel i go directly to a weird dream state-- i think we will be fine. Health anxiety feels so real when its not.
Its pretty ass man, I'm not gonna lie. I dare say you're right in that nobody on any anxiety forum in the history of ever has correctly predicted a prion diagnosis. When the most common form of it is still a 1.5 in 1,000,000 shot, you know you might be jumping the gun a little bit.
The problem is, I know my symptoms are real. Not the "anxiety makes them real" type. I mean tangible; like consistent, persistent and painful. So I know there is a cause here. My only problem is, the one cause I can put to them that actually fits from a clinical perspective happens to be Vcjd. I know how rare it is, I know that if it was to be the case, I'd be the first person in 2 years to even be diagnosed with it. I know i'd be the first person EVER to be born after the SBO ban in 1989 to be diagnosed with it. But I just can't find another explanation.
Just about everyone on this forum was totally and completely convinced about their fear du jour too. In all my time here I know of TWO that actually realized their fear and both are doing fine. I know of some that were actually diagnosed with a physical issue but it wasn't their worst fear.
I don't doubt you're experiencing physical symptoms, it's just not what you believe it to be. This thread was started in December of 2017. Nearly 4 months of worry and still going strong. Something's gotta give and it won't be a diagnosis of VCJD. I'll have the "Told ya so gang" on standby.
Positive thoughts
Just about everyone on this forum was totally and completely convinced about their fear du jour too. In all my time here I know of TWO that actually realized their fear and both are doing fine. I know of some that were actually diagnosed with a physical issue but it wasn't their worst fear.
I don't doubt you're experiencing physical symptoms, it's just not what you believe it to be. This thread was started in December of 2017. Nearly 4 months of worry and still going strong. Something's gotta give and it won't be a diagnosis of VCJD. I'll have the "Told ya so gang" on standby.
Positive thoughts
It's weird though because I know you're almost certainly right. I can't apply the logic to myself that I do with everyone else no matter how hard I try. It's not as though i'm hysterically convinced because you can't be truly convinced when dealing with something this rare. Its just that nagging 10% doubt and it will not leave me alone.
Starting to look less likely now, not gonna lie.
Starting to look less likely now, not gonna lie.
Not gonna lie, it wasn't likely from the start :winks:
Positive thoughts
Not gonna lie, it wasn't likely from the start :winks:
Positive thoughts
For the first time in almost half a year, I'm slowly starting to plan for the future again instead of planning for death. Im sleeping better, I'm not googling at all. Things are beginning to change.
I still have many of the physical symptoms, and im sure there is some physical cause. However I'm now finally starting to accept that whatever the cause may be, it's almost certainly not that truly terrifying disease I thought it was.
6 months in. Still got all the same symptoms, no decline whatsoever in terms of ability to perform tasks, walk, move, remember etc.
Further evidence against Vcjd.
Very few documented cases of people going this long without severe motor deficiencies and/or cognitive decline.
Still putting updates up because I know for a fact that there will be people in the future who have similar fears and will take a similar path as to me, and I know there is very little out there for reassurance. There won't be many cases that look as much like Vcjd can do as mine, so I think to the right person who finds this thread, it will be a massive reassurance.
Here is a summary of my case.
- 28 year old male
- lived in the UK during the outbreak
- early and spontaneous anxiety/depression/insomnia
- Persistent appearance of cold feet (25% of all cases)
- Painful dysthesia/hypersensitivity upon touch of legs (25-50% of cases)
- Numbness in right fingertips upon use (25-50% of cases)
- Persistent odd sensation under right eye of face (facial sensations are common)
For anyone in the future reading who shared my fear. You will know from searching the disease up that those symptoms and risk factors are very rare and very specific to this disease. I had all of them, still do, no idea why, but its starting to look like its all fine.
So if someone who has all those classic symptoms in the country of BSE origin can be fine, then you will almost certainly be to. Will post again every month until 12 months when 100% certainty is confirmed as no case has ever gone that period of time without major decline.
Month 7 now.
Some changes noted as well as a persistence of usual symptoms.
Developed frank hypersensitivity in right thigh, this lasted about a week then subsided, so not hugely concerning.
Intermittent nerve pains in finger tips that last between 6 hours and 2 days. Again, new and uncomfortable but not massively indicative of anything serious like prion diseases.
Had some comments about lapses in orientation and concentration but others but i'm not personally convinced myself there is a sinister cause behind this.
Sleep has improved considerably.
Allodynia seems to be slightly improved.
Another month above ground reached.
Allodynia seems to be slightly improved.
How do you manage having such a physical job whilst suffering with allodynia?
I'm an electrical engineer, and I literally crawl around in this stuff every day. It's fine, the dust from old stuff will give you a cough though.
How do you manage having such a physical job whilst suffering with allodynia?
its not easy and I have to change into shorts the minute I get home.
Loose fitting pants with elasticated waists are the key
Not wore jeans in 5 months.
9 months in now.
Conclusion?
No f****ing idea.
WorryRaptor
18-10-18, 21:01
Freaking out about prion disease too, especially after the whole thing recently with bse being found in a beef cow in Scotland. I was a kid during the 80s-90s outbreak but lived in Ireland which had bse cases during that time . I have had all the same symptoms as you, plus a few extra like limb pain and left sided numbness that comes and goes. Standard blood tests, neuro evaluation and mri have brought up nothing, so Im zeroed in on a prion disease... Of course. They were even genuinely concerned I had MS, so synptoms feel very real. Your updates were quite comforting. Hope youre doing well now?
Freaking out about prion disease too, especially after the whole thing recently with bse being found in a beef cow in Scotland. I was a kid during the 80s-90s outbreak but lived in Ireland which had bse cases during that time . I have had all the same symptoms as you, plus a few extra like limb pain and left sided numbness that comes and goes. Standard blood tests, neuro evaluation and mri have brought up nothing, so Im zeroed in on a prion disease... Of course. They were even genuinely concerned I had MS, so synptoms feel very real. Your updates were quite comforting. Hope youre doing well now?
ups and downs, flare ups seem to come and go.
Atm they are bad again, but in my mind I am more relaxed about it because its been like this a while now. Something scary happened yesterday though where I had no idea who a person I knew was for like 5 minutes. It wasn't until he corrected me about where he was from that I actually realised who I was talking to, was very very strange... I had been on stag do's with him and did a speech at his daughters wedding but I thought he was someone else entirely.
this particular disease is by far the worst to fear. Ive been a hypochondriac for 20 years, and never in my life have I been this bad. I have cried more in the past 2 years of my life than I did in the first 30 combined.
The past few weeks have been the worst. I feel like my whole body is just a mess. I'm so shaky, jittery, spasmy, crampy, and fatigued. Have no motivation at all, totally hit rock bottom.
Pleeeeease don't google. It ruined my life the past 2 years.
this particular disease is by far the worst to fear. Ive been a hypochondriac for 20 years, and never in my life have I been this bad. I have cried more in the past 2 years of my life than I did in the first 30 combined.
The past few weeks have been the worst. I feel like my whole body is just a mess. I'm so shaky, jittery, spasmy, crampy, and fatigued. Have no motivation at all, totally hit rock bottom.
Pleeeeease don't google. It ruined my life the past 2 years.
good news is though if you are 2 years in then unless you have a family history the chances of it being a spongiform encephalopathy are virtually 0.
all these neuro diseases. I've had crampy calves since I was a kid, about 20 years. I've been a twitcher at least 5 years, probably longer just never paid attention to it. I've had shaky hands since I was kid. I've had the "difficulty swallowing" thing since I was a kid. But I used to be such a fast typer, lately my hands and fingers don't feel up to it like they used to, and its getting me so panicked. I had a doc mention Ehlers Danlos syndrome to me once as something I "could" have, because I have weird joints. I just never bothered to get tested for it.
New symptoms now, for the last two weeks a constant tongue burning.
Very odd, reminds me a of the clare tomkins case, who complained of a bad taste in her mouth for around 10 months before she was diagnosed.
9 months in now.
Conclusion?
Anxiety!
Positive thoughts
Anxiety!
Positive thoughts
I've ruled anxiety as a cause out now.
I have had bouts of anxiety in my life and they generally range from 2 weeks to 4 month bouts, then go away. This is now 12 months strong, with no reduction in symptoms and arrival of new ones every so often that also maintain persistence.
I had an MRI in mid-december, doctor says to rule out MS. I am expecting them to find nothing. Haven't even bothered to chase it up via the GP.
MRI rules out MS (never in doubt)
Bad taste in mouth still present
Leg dysesthesia still present
Fingertip numbness in right hand still permanent
Right eye sensation still intermittently present
Insomnia going 1 year strong every night. (goes to show you can still function with severe insomnia long term)
Memory and confusion (odd scary issue but seem isolated for now)
Approaching 13 months since start of symptoms.
AMomentofClarity
09-01-19, 23:30
I've ruled anxiety as a cause out now.
Great! Where did you get your neurology degree?
MyNameIsTerry
09-01-19, 23:50
I've ruled anxiety as a cause out now.
I have had bouts of anxiety in my life and they generally range from 2 weeks to 4 month bouts, then go away. This is now 12 months strong, with no reduction in symptoms and arrival of new ones every so often that also maintain persistence.
I had an MRI in mid-december, doctor says to rule out MS. I am expecting them to find nothing. Haven't even bothered to chase it up via the GP.
You've ruled out anxiety because it doesn't follow your normal pattern. But you haven't thought about how these patterns can change, disorders can worsen in severity and how many of us on here have had years of non stop daily anxiety.
In my years I've seen all sorts of patterns. I came to the conclusion that you never make a judgement without seeing a pattern. There are so many transient issues with anxiety. I apply this to considering whether something is a blip or a real relapse. But perhaps you need to consider your anxiety has changed?
tryingtosurvive1
22-01-19, 01:42
did you get a nerve conduction study for your hand to see if you have trapped never? have you gone to the dentist for your mouth issues? have you considered your cognitive issues could be due to not enough sleep? p.s. I think by now people with vcjd or whatever it is called are really incapitated.
Approximately 16 months into it now.
New stuff
- Developed a rash that that covered all my torso, doctors don't know what it is but think it's unrelated to nerve issues. Its patches of white and seems to be spreading by the day.
- Short term memory seems to be getting worse, having particular trouble with digit recall and spelling words backwards, and recalling events of previous days (same day is fine).
- Had shooting pains resulting in violent jerks of left shoulder
- Left hand is also beginning to follow the same as the right in fingertip numbness.
Old stuff
- Numbness of right hand fingertips
- Insomnia and vivid dreams
- Painful sensation of both upper legs in pants and upon light touch
- Pulling sensation intermittently under right eye.
- Cold feet still there
Bad taste seems to have more or less gone though, but that's about it for improvements.
I am still very distressed by it all, 16 months is a long time to be suffering with all this crap and the lack of answers really is frustrating. I have stopped visiting doctors now as I am fed up with long waits and fruitless referrals.
Prion disease of some form is still a possibility, especially given I had a normal MRI in December (ruling out MS and CNS Lymphoma). Vcjd cases have been known to go up to 24+ months before serious neurological signs like myocolous, ataxia, and dementia kick in and specialists are called in to give an assessment. Granted this is rare, I think its around 20% of past cases are able to walk and function normally after 12 months. Still hasn't been a new case in MV genotypes since 2016 though. So very rare indeed. I've found the odd case of CJD in the literature where a rash was present (including the very first case ever discovered back in 1920) but overall it seems likely to be either unrelated or suggestive of another cause, perhaps autoimmune?
You are determined, I'll give you that!
Hope you feel better soon!
Positive thoughts
So do I, friend!
Expectations aren't high though :roflmao:
Update of new additions of symptoms for personal future reference.
- Return of the sticky saliva sensation at the back of my throat.
- Frequent muscle twitches, including hotspot in left thigh and a new muscle twitch that is constant in the left shin (invisible to naked eye, possible fibrillation)
- Lower back ache
- Waking up in the middle of the night with increased sharpness of old and new symptoms, particularly the muscle twitching/burning sensation in thighs and oddly tooth pain?
Perplexing constellation of symptoms to say the least.
Really have never seen/read about anything like it.
Would not rule anything at all out at this point.
AMomentofClarity
24-04-19, 21:52
Update of new additions of symptoms for personal future reference.
- Return of the sticky saliva sensation at the back of my throat.
- Frequent muscle twitches, including hotspot in left thigh and a new muscle twitch that is constant in the left shin (invisible to naked eye, possible fibrillation)
- Lower back ache
- Waking up in the middle of the night with increased sharpness of old and new symptoms, particularly the muscle twitching/burning sensation in thighs and oddly tooth pain?
Perplexing constellation of symptoms to say the least.
Really have never seen/read about anything like it.
Would not rule anything at all out at this point.
Anxiety!
Anxiety!
Way beyond that.
EEG has confirmed pathology in the right hand, slow wave activity suggestive of carpal tunnel syndrome but the physio tests exclude it. Remains unexplained.
Body wide Rash is also unexplained but impossible to be anxiety, anxiety can do many things but case skin de-pigmentation? No
The rest I guess could be attributed to anxiety possible in some cases, but taken with the above evidence have to be taken a little more seriously.
AMomentofClarity
24-04-19, 23:13
Way beyond that.
EEG has confirmed pathology in the right hand, slow wave activity suggestive of carpal tunnel syndrome but the physio tests exclude it. Remains unexplained.
Body wide Rash is also unexplained but impossible to be anxiety, anxiety can do many things but case skin de-pigmentation? No
The rest I guess could be attributed to anxiety possible in some cases, but taken with the above evidence have to be taken a little more seriously.
What did the doctor who performed the EEG say?
MyNameIsTerry
25-04-19, 02:15
But it's still not the very rare prion disease you have spent how long worrying about? So, what are you doing about tackling your obvious anxiety?
For the benefit of all reading in the future who may be worried about this specific strand or prion disease, or any other. I'd just like to say i'm fine.
Its over. And no matter how bad it might seem right now, at some point in time, it will be for you too.
My symptoms were real, there was no imagining things. Some still linger to this day but none are as severe.
You have probably read the case studies, and if you have you'll know just how many red flags I seemed to hit. It turned out to be a dud. It did for me, and it will for you too.
When all is said and done, its a numbers game, and the numbers on rare diseases like this just don't lie. It ain't gonna happen.
You won't get over your fear and stress over night, it takes months, even years if you are deep enough down the rabbit hole; but I will say this, at least I hope with this post you will take some comfort. I remember every stage of this thread, and what I was feeling at each point, and honestly, around March 2018 I was genuinely contemplating suicide; every single night I got into a hot bath and resisted the urge to open my wrists, I felt that hopeless. I got through it. So will you.
Thanks for your latest message. Glad to hear you’re doing well. A nice reminder that the sun always rises.
Hi there
I was or am very terrified of vcjd. I am 21 years old and born on April 26th, 1998 in Switzerland. I've never been to the UK. I have been afraid of diseases for several years but this fear was the worst there is. I constantly control my memory. Every time I forget something I think it's normal or variant CJD. I also have pain in my legs from time to time, but these are gone. Sometimes. I have the feeling that my cheeks are numb ... I also have dizziness, lightheadedness, headache and permanent tinnitus. sometimes I feel like I have myoclonus, but I'm never sure. Last month I had pain in my cheek for several weeks and was thinking about VCJD again. The dentist thinks it's wisdom tooth and Karries. what if that's just a coincidence The pain is gone, however. For fear, between June and December 2019 I had 6 MRI in a 3 Tesla device with FLAIR and DWI weighting 3 EEG without slowdown and 1 lumbar puncture 14-3-3 negative and TAU normal. But I'm still afraid of CJD What if I'm early?
MyNameIsTerry
05-01-20, 22:57
What have you done to challenge your anxiety? Are you at least now able to look back and know you were wrong? Have you thought about how much you suffered...for nothing? And what about the next time you work yourself into this hole because only HAers do this. I wouldn't care about having your symptoms, many on here wouldn't, and you would look at my years of worries and tell me how pointless it all was.
I am 21 years old and have been afraid of the new variant CJD since May 2019. I have tinitus and a frequent headache. Sometimes I also have pain in my legs and they go back after a few days. I also had pain on the right side of my cheek. The dentist said it was the acne tooth because the mucous membrane was inflamed ... But I'm afraid that these are CJD symptoms. Often it tingles or spikes briefly in the legs or in the. Face. Sometimes I also have deafness. B. between the. Thumb and forefinger.
Between July 2019 and December 2019 I had 5 MRT 3 Tesla with DWI, FLAIR, T2 3D Toff and DIR sequence without any findings. In addition, I had 3 EEGs without any findings and without general changes or slowing down. Lumbar puncture in the. November without findings. 14-3-3 Negative TAU values also normal .. I also often have tiredness, dizziness, concentration problems and also have the feeling that I forget everything ... I wanted to do all the tests voluntarily. According to doctors, there was no reason to do so.
how likely is a variant CJD if 5 MRI, eEG lumbar puberty TAU, 14-3-3 is normal.
Thank you for your response. I live in Switzerland and have never been to the UK
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