Health Anxiety and me - Scared I have vCJD and other things

[worriedsick2009]

Hi, this isn't my first post but let me introduce myself. I am a 26yo male and I have been to docs back and forth over the past 2 1/2 months. It all started with me feeling really tired after a busy few months at work. I developed muscle pain in my stomach, and the front of my neck and all of my muscles seem to tremor after minimal exertion and also twitch a lot.

I was constantly getting the chills and just feeling crappy. GP doc said nothing was wrong with me - prescribed an allergy test - im allergic to everything but it wasnt causing my symptoms. Went to a neuro he did a clinical exam (no emg/eeg/mri etc) and said i had no physical symptoms of a neurological illness.

This brings me to where I am today. I still generally feel tired. Using my mouse my hand gets weird feelings in the forearm after a few hours of use. My fingers are tingly. the muscles in my legs are always tired and sore, and I still have twitches (not like normal twitches there are just one-timer jolts).

For a month I couldn't sleep well I kept thinking i was about to have a seizure. The jerks I was feeling as I was about to go to bed were waking me up and keeping me from sleeping i kept waking with a start thinking "oh no this is it" I still wake up with a start every so often but not for the same reason. Now i have convinced myself that I have vCJD, or at least something horrible like a brain tumor or lymphoma or leukemia.

I dr. googled my symptoms and it was like "bam u have cjd." My symptoms started with anxiety feelings, and some panic, and muscle fatigue and tiredness. The docs say it is all anxiety related but I look up the first symptom of vCJD and it is anxiety, depression and mood changes - after reading all of the case studies it seemed like this disease progressed by anxiety->some muscle problems->loss of short term memory->balance problems-> paralysys and death =O
According to Dr. Google and pubmed, vCJD patients are always forwarded to psychologists first until their symptoms get too bad and then they are put in the care of a neurologist to figure out why they aren't walking straight.

I feel like every morning I wake up and think "ok can i walk straight, can i talk... is this the end?" Then I perceive slight changes in the way I feel - oh no is this arm more tingly than that arm? why is the right side of my face more tingly than the left, is it numb? yes I think it feels numb compared to the left side. And then I go on like this all day every day.

I am getting married in 2 months. I am scared that i won't make it to that day or that as soon as it gets here I will be an invalid.

Also as for the meat thing - I have had all kinds of "exotic" mean i.e. deer, moose, caribou from the states/canada. Also I ate meat in france at McD's in 1995.

Has anyone else had these symptoms? to anyone else who "had" cjd in thier medical anxiety how did you feel? were the symptoms as "real" as mine? I get some pretty intense pain in my limbs, numbness, tingling. I want to brush it off as just worry or anxiety but then when i try to hold a phone up to my head and my hand starts shaking like it never used to, or when my hands get tired after using the comp (for example just after writing this)- i get worried and sad.

thanks for listening to me
-WorriedSick

[worriedsick2009]

"new" symptom.

As I had said before, my muscles feel like they tremble after exertion. While moving my bicep muscle and doing a "curl" there is no trembling, but upon slowly moving it back towards full arm extension with some resistance, my arm shakes horribly. also I feel like putting a bottle or cup up to my face, or a straw is strenuous and shakes ever so slightly.

[AntiLove_SuperStar]

I have never had the symptoms, but I have certainly been very upset because some folk with credentials think it has an incubation period of up to 20 years! But opinions vary.

Its like anything else, who knows what'll happen?

It is a fact, however, that in UK at least cases have gone DOWN in recent years. It is a very, very rare disease in any event.

If you have had all those tests, I'd assume you have no problems right now. All the above symptoms can be explained by anxiety.

Ultimately - whats more likely - that you've gotten anxiety and this has given you a lot of physical symptoms (LOADS of people have this!), or that you actually have vCJD. Statistically, almost certainly the first option, especially given the tests you've had, etc.

[CJH86]

Hi, i had very similar symptoms in jan and Dr Google gave me the same diagnosis...i was utterly convinced i had CJD for a couple of months (especially as my anxiety had manfested out of nowhere, logic completely went out the window) despite running backwards and forwards to the Drs for neurological exams, nobody could convince me otherwise!

I got so convinced i couldnt walk properly, that my left leg was going to give way and it didnt feel 'right', headaches, my memory did actually go and i got cross with myself and would continuously test my memory (sad i know), my muscles continuously twitched (especially my right hand) and i got pains and pins and needles in my legs....the list is endless. My symptoms felt so real that it actually took a couple of months to realise my symptoms were not getting worse...thus making my diagnosis unlikely!

I totally sympathise, not a nice thing to go through

.....also i noticed you replied to my other thread about health anxiety - im also in a medical field and felt silly for worrying about the most unlikely diagnosis possible, but again logic seems to leave when the anxiety sets in x

[worriedsick2009]

has anyone had any symptoms of muscle pain or aches? that is mainly what i'm having aside from being anxious to get to sleep. My muscles always ache and hurt and feel stiff. Im feeling like these symptoms couldn't possibly be from anxiety.

[worriedsick2009]

blah i feel like every day its something different. i still am having trouble sleeping and find myself waking up at 2am after falling asleep at 12:30 just to get up go to the bathroom (pretend in my head thats why i had to get up maybe), then go to my comp and check forums for an answer.

still have pain in my neck. right leg/foot feel tingly and muscles all over seem to ache. Also my hands dont feel like they grip as well anymore and i feel as if i have lost some control over my pinky especially in my right hand.

once again sorry to post this stuff, but i think getting it out is part of the therapy. (hoping its just anxiety).

edit: also maybe i can look back on this and laugh one day.

[CJH86]

Getting it out definately helps...i wish i could have talked about it when it all happened to me - i was too embarrassed to tell anyone (especially about the CJD worries:blush:) at the time through fear of being laughed at or being told i was going mad.

I did get the muscle pains and aches consistantly, also joint pain, pins and needles, wierd muscle feelings and spasms.....you name t really -how it was all related to anxiety i will never know and nobody in the world could have convinced me at the time!

At night night my legs used to feel like i was having electricity zapped through them and one of my hands would go numb while i was asleep......also similarly to your hand symptoms my fingers would feel too weak to type and hold things.

I have to say i spent way too long trawling through journals/websites all night and became completely obsessed with trying to account for all of my symptoms. Turns out in the end they were ALL anxiety related (and precipitated by sleep deprivation) as im sure your symptoms are too, anxiety completely blows things out of proportion x

[worriedsick2009]

Getting it out definately helps...i wish i could have talked about it when it all happened to me - i was too embarrassed to tell anyone (especially about the CJD worries:blush:) at the time through fear of being laughed at or being told i was going mad.

I did get the muscle pains and aches consistantly, also joint pain, pins and needles, wierd muscle feelings and spasms.....you name t really -how it was all related to anxiety i will never know and nobody in the world could have convinced me at the time!

At night night my legs used to feel like i was having electricity zapped through them and one of my hands would go numb while i was asleep......also similarly to your hand symptoms my fingers would feel too weak to type and hold things.

I have to say i spent way too long trawling through journals/websites all night and became completely obsessed with trying to account for all of my symptoms. Turns out in the end they were ALL anxiety related (and precipitated by sleep deprivation) as im sure your symptoms are too, anxiety completely blows things out of proportion x

thanks for the support. yeah i kinda do feel a little stupid for even suspecting such a rare illness, but every morning i do wake up with a start to check for "progression." im hoping i can put this out of my mind soon.

[theforester]

I am a 26 year old male with similar symptoms as well. I've had symptoms since around October of 2004. At first it was just dizziness and a few panic attacks while in college. I saw over 10 doctors up until May of 2008 when a nutritionist put me on a low carb/very high protein diet. About 3 weeks after starting the diet I started having constant neverending "panic". Nothing would help with this (Xanax used to help with the panic during the first 4 years, didn't even make a dent afterwards). I tried deep breathing, relaxation, yoga (when I felt like I could move), Xanax, Ativan, Citalopram, and others. Nothing helped.

Anyway, I've since quit the diet, and am back to eating semi normal again, but many of the symptoms that began in the 6 months of constant panic have not gone away. These symptoms are very similar to what you have described here. While it's not haunting me, the thought of vCJD has crossed my mind and scares the heck out of me. I was eating a piece of meat the size of my fist every 2 hours of every day while I was on that diet (ironically to try to help my dizziness, not my weight) so that doesn't help my "what if" scenerios.

Anyway, I also ache everywhere. To me it feels like my joints are...mad, and my muscles are weak and sore. I can totally relate to the twitches/spasms, fatigue, stomach pain (mine is around the bottoms of my ribs), and "strange" feeling that is sort of like being weak. I haven't dropped anything, but my grip usually seems weak and uncertain. I am also shaky and many times it feels like my body is vibrating. One of the most worrysome symptoms that has only developed since January is the feeling that I'm drunk. I do not drink, and haven't since 2004, but I feel exactly like I'm drunk, strange reflexes and all.

I'm seeing multiple doctors right now and surprisingly that is not helping me much. My psychologist (who I've only known for a few months) says that it's anxiety. My cardiologist/neurologist says that it is most likely a nervous system dysfunction (which is causing anxiety-like symptoms). And other doctors have given me similar conflicting info.

I really hope that it is all anxiety related and that we can recover soon! I definitely need help convincing me that it is anxiety and no one seems to know! Arg :shrug:

Good luck Worriedsick, If I figure out what mine is you can bet I'll be sharing it with you all!

[worriedsick2009]

I am a 26 year old male with similar symptoms as well. I've had symptoms since around October of 2004. At first it was just dizziness and a few panic attacks while in college. I saw over 10 doctors up until May of 2008 when a nutritionist put me on a low carb/very high protein diet. About 3 weeks after starting the diet I started having constant neverending "panic". Nothing would help with this (Xanax used to help with the panic during the first 4 years, didn't even make a dent afterwards). I tried deep breathing, relaxation, yoga (when I felt like I could move), Xanax, Ativan, Citalopram, and others. Nothing helped.

Anyway, I've since quit the diet, and am back to eating semi normal again, but many of the symptoms that began in the 6 months of constant panic have not gone away. These symptoms are very similar to what you have described here. While it's not haunting me, the thought of vCJD has crossed my mind and scares the heck out of me. I was eating a piece of meat the size of my fist every 2 hours of every day while I was on that diet (ironically to try to help my dizziness, not my weight) so that doesn't help my "what if" scenerios.

Anyway, I also ache everywhere. To me it feels like my joints are...mad, and my muscles are weak and sore. I can totally relate to the twitches/spasms, fatigue, stomach pain (mine is around the bottoms of my ribs), and "strange" feeling that is sort of like being weak. I haven't dropped anything, but my grip usually seems weak and uncertain. I am also shaky and many times it feels like my body is vibrating. One of the most worrysome symptoms that has only developed since January is the feeling that I'm drunk. I do not drink, and haven't since 2004, but I feel exactly like I'm drunk, strange reflexes and all.

I'm seeing multiple doctors right now and surprisingly that is not helping me much. My psychologist (who I've only known for a few months) says that it's anxiety. My cardiologist/neurologist says that it is most likely a nervous system dysfunction (which is causing anxiety-like symptoms). And other doctors have given me similar conflicting info.

I really hope that it is all anxiety related and that we can recover soon! I definitely need help convincing me that it is anxiety and no one seems to know! Arg :shrug:

Good luck Worriedsick, If I figure out what mine is you can bet I'll be sharing it with you all!

wow how strange is that. I was also on a low-carb diet since roughly 2003. I tried to lose weight with it, then i fell off, then I would start again. Basically ive been eating a LOT of meat over the past few years which has me scared of vCJD. That and ive been taking whey protein supps like powdered whey protein and who knows where the heck they get the stuff to make it out of. (i really dont trust thos companies). Basically, if you've been living for 4 years with these symptoms, its probably not vCJD since that tends to kill within 2 years.

I have had a couple of days when i've felt "drunk" or out of it. i think anxiety can do that. are you permanently in that state or is it only after you worry yourself for a while?

have you found your personality has changed? more outgoing, less outgoing, something big change?

hope you find answers as well. If you don't mind me asking, how did the docs come to say that you have a neuro problem causing the anxiety? have you had an MRI/MRA/EEG etc? feel free to PM me if you like.

[worriedsick2009]

this is the thing that has me scared: i read this article

http://www.ramcjournal.com/2006/mar06/wickenden.pdf

Read at your own risk. i feel like Case1. (except not a soldier)

[theforester]

Huh...that is quite interesting. My low carb/high protein diet was only from May 08 - Octoberish 08, so not nearly as long as you have been doing it! Of course I ate enough protein in those few months to keep a pack of wild dogs alive for years :doh: . Anyway, I don't mind posting this stuff on the forums. If what I'm going through can help someone else with their issues it will be well worth it.

Yeah, before the diet my main complaints were dizziness/fatigue, a few short term panic attacks, sensitivity to fluorescent lights, and my joints hurt. This was obviously not pleasant and did slow me down quite a bit, but I still was able to drive without problems for up to around 30 minutes (more than that and I usually began to get panicky), and I could still work a part time delivery job. 3 weeks after starting that diet however is a completely different story. I've got countless symptoms now, many new and a few of the old ones. They seem to be slowly shifting as well. I suppose 5 months of solid intense unending panic attack will make you more unstable. I just can't figure out why...I mean I was eating WAY too much protein and virtually no carbs, but still...I've been told that a diet like that doesn't usually give people any problems so I'm at a loss. I am now mostly a couch potato and have a very hard time doing simple things. I'm living with my parents and can only drive a few miles at a time, on good days. My personality is pretty much the same, but I'm definitely a lot less outgoing, but not by choice obviously!

Sorry for the little rant, I'm just quite frustrated. :lac: Anyway, I keep trying to tell myself that I can just ignore the idea of CJD, but it still sits in the back of my mind saying stuff like "well it didn't get this bad until you ate tons of protein", "the doctors can't figure it out", and "you did eat some meat when you were in Scotland and England in 2001". I just can't seem to shake the possibility, however unlikely, but I'm not dwelling on it much.

The "drunk" symptom is one of the newer ones. It started when I was trying the drug Bentyl (a very common antispasmodic) to see if some of my stomach issues were IBS. First dose didn't do anything. Second dose made me feel like I just drank a half a bottle of whiskey. It got better when I stopped taking the Bentyl but has not gone away since. So that's going on 3 months now. It is....well very annoying and can be quite freaky. I've been able to keep myself from from panicing for the most part, but man is it hard! Plus when I have tried to start eating any meat again I start feeling the "panic" again, so that has me convinced that it's related somehow to foods.

I have had too many tests done to count. The majority of them were done before the whole diet stuff...so before May 08, but I have still had many since then. I have had an MRI/MRA of my abdomen, because of the tightness under both my ribs and virtually constant shortness of breath. I've had an EEG, tilt table test, and enough bloodwork to leave me a virtual pincushion.

I believe that the doctor's suspicion of dysautonomia is based on my list of symptoms, the results of one of my prior tilt table tests (said that I had "mild" POTS) and then his personal observation of some very strange blood pressure readings. For example with POTS your blood pressure will drop when you stand up (and will drop the longer you are upright). This is known as Orthostatic Hypotension. However, he took some BPs and heart rates at office visits that showed just the opposite! My BP actually went up quite a bit when I stood up. This is called Orthostatic Hypertension, which is a virtually unseen phenomenon I guess. My BPs do not seem to follow any pattern with this, sometimes they will drop when I sit up or stand, sometimes they'll rise, sometimes they don't change much. It's quite variable.
I'm not sure if his suspicion of nervous system dysfunction/dysautonomia is based on more than this or not, I'll have to ask him next time I go! Anyway, the autonomic nervous system is the main "behind the scenes" system in charge of everything involuntary (at least as I understand it). So seeing all of these seemingly odd changes in BP, along with panic/anxiety like symptoms, plus dizziness I think it's the only thing that makes sense to him. Since the autonomic nervous system is the system in control of the sympathetic (fight or flight/panic) and parasympathetic (digestion/relaxation) systems it does fit. My problem of course is whether or not it is a chicken or egg issue. He doesn't seem to think that anxiety could cause all of my symptoms. And then of course my psychologist says that there are no "physical" conditions that can cause symptoms like mine, only a psychosomatic condition can cause so much.



Meanwhile I just sit here feeling horrid and not knowing what to believe! Drives me nuts!:roflmao:



So that's my basic story, how about you? You can PM me as well if you don't want your info in the post. Hope you are well. And anyone else reading this, I hope you are doing well too! :)

Take care and good luck WorriedSick,

~Zeb~

[theforester]

Of course, the likelihood that we have vCJD is pretty much zero. It is much more likely that it is a more common issue such as anxiety! :blush:

[worriedsick2009]

Of course, the likelihood that we have vCJD is pretty much zero. It is much more likely that it is a more common issue such as anxiety! :blush:

im coming to realize that. in the back of my brain, however, is the notion that as soon as i let my guard down, BAM it will hit me.

Still having muscle pain everywhere, some twitches, some jerks, problems with hand dexterity, feeling of numbness in my face, pain in my abs in weird places, pain in my front neck etc, and still looking for that "next" thing.

[theforester]

Still having muscle pain everywhere, some twitches, some jerks, problems with hand dexterity, feeling of numbness in my face, pain in my abs in weird places, pain in my front neck etc, and still looking for that "next" thing.

I hear ya'. It's the same for me. Even though my "panic" has been much better the last few months, virtually all of the symptoms that came with it have remained. Even when I feel like I'm relaxed I feel them, which drives my "what ifs" wild. I guess we just have to try to ignore our symptoms the best we can...but that is certainly no easy task! Especially with the ones that are constant :wacko: .

I've been trying to ignore them all day today and haven't had much success. Lately I've been having short periods of time, maybe 10 minutes or so, where I've been able to not think about any symptoms. This has only been a few times every day, but that is definitely an improvement for me! Of course when I put myself under even the slightest amount of stress I don't seem to be able to get away from them. :shrug: I just keep telling myself that I've been through a lot for a long time, so I've just got to accept that I WILL get better, but it WILL take a long time. My psychologist put it a good way (at least I thought it was, being a movie buff). He said that my situation is a lot like that of Froto Baggins in Lord of the Rings. :doh: I have a huge burden that only I can carry, but I can't give up. I must keep trying and keep thinking of my goals even with the symptoms (the ring) wearing me down and making it feel impossible. He put it a bit better than that, but you get the idea. It does make the struggle feel more...fruitfull, thinking of it as an epic journey!

It's also a little coincidental considering my sig line (that I've been using on forums since way before my symptoms got bad) is a JRR Tolkien quote! :ohmy:

[ka]

This is my latest anxiety worry too and it is just awful I know. It would be pretty coincidental if all of us here on the anxiety forums suddenly got diagnosed with mad cow disease AS WELL AS having health anxiety...

Any tips on how to overcome this obsession? Actually to be honest I think we all know how to overcome it - stop seeking reassurance online, stop looking up symptoms cos we could diagnose ourselves with just about anything doing that, accept the worries but get on with our daily lives and it will fade away in time - but it's vv difficult and painful to stop seeking reassurance so we want a quick fix, so come online and the whole thing starts again and just reinforces the obsession... Says she who is supposed to be doing CBT practice by NOT looking stuff up online and look where I am?

Small steps eh :)