vCJD Again

[Shntbehere]

Hello

This is going to be a stupid question.....I know...but there is something I am curious about with vCJD. Since late August I have been experiencing terrible gastrointestinal symptoms. Two years ago I was diagnosed with Crohns disease after a colonoscopy (where they werent even looking for the disease). Over 13 ulcers were found, but oddly enough the biopsy came back inconclusive. The genetic test came also back negative, leading my doctor to be left in a confused state. For two years I continued to have generally mild symptoms, mostly terrible constipation, until August. It was then my symptoms completely reversed. For the past four and a half months I can't stop going, even on limotil. I go on average three times a day; food passes right through me. I also have twitching and burning in my intestines. I have had generally no appetite, and I can't really tell when I am full.  I am constantly shaking with anxiety due to my health condition.

I had a 2nd colonoscopy which showed my ulcers were gone back in September. A couple weeks ago I had a small intestines biopsy to check if it was celiacs. I stopped eating gluten for two weeks thinking it might help. Low and behold, that test also came back negative. What it did show, however, was horrendous esophogitis and acid reflux disease, plus a small ulcer. I have lost about 10 pounds in the past 2 months. I am a VERY thin individual, so these 10 pounds are vital to my health.

I have also had some other weird symptoms these past few months. Dizziness started in early November;  which has generally abated. And MRI was conducted and came back normal, so did full blood work which analyzed my thyroid functions. I am not malnourished either. I have had weird feelings of heat in my right leg, and I am seeing visual disturbances in the form of little stars which come and go quite frequently.

My question is this: I know vCJD presents itself with weight loss, anxiety, dizziness and visual disturbances. My doctors are convinced my bathroom visits are connected to anxiety. Is vCJD weight loss connected to constant "going" or just weight loss independent of gastrointestinal problems? That is, does CJD or vCJD have any initial gastrointestinal signs?

[sixpack]

I believe you are passing up the most logical causes of your issues  a history of gastro issues and anxious over thinking      AND yes anxiety definitely messes with gastro system.  the more you fret over it, the worse it will get.


thinking you have such a rare disease is a HA peeps fantasy.  I don't mean fantasy as in you want that but it is one of those FANTASTICAL worries that only HA peeps give credence to.  The more you indulge this line of thinking, the worse you will end up feeling.


what do you do for your anxiety disorder?  what is working?  what isn't?  what are you willing to do to get on your healing path?

One of my new favorite quotes by Soren Kierkegaard that I came across recently in a book:

There are two ways to be fooled.  One is to believe what isn't true; the other is to refuse to believe what is true.

around here many of us HA peeps are guilty of engaging in both ways.   

[Shntbehere]

Thanks for your words! But does anyone know if there are outright gastro signs other than the weight loss?

[Vigilante]

Gastro problems and nvCJD? no way....if you had visual problems, twitching, memory loss, walking problems (gait) trouble talking and so on....you still wouldnt have cjd it would still be something else. you have more chance of the winning the lottery really.

btw I once thought I had nvcjd, due to having multiple vision, twitching muscles, jerking as I tried to sleep, I even lost my ability to throw darts - which I was very good at then all of a sudden I couldnt even hit the dartboard. It wasnt CJD it was Anxiety.

Weight loss and cjd? its more than likely due to not eating or feeding theirselves.

Realise this is an irrational fear.

[sixpack]

I agree with vigilante (as I basically said in my first post) vCJD is an irrational fear.  It is a fairly common one around here though.  Of course none who've feared it actually had it.  Most who've feared eventually come to the conclusion it was an 'out there' fear and either start working on their anxiety disorder OR move onto a new disease fear.


what do you do for your anxiety disorder that is leading you to such fears?

[Shntbehere]

Nothing. Honestly I have had a life filled with poor health. My gastro problems have kept me functioning at 100% for the past two years, and doctors can't seem to put their finger on whats going on. vCJD came about in my mind because even though I have had gastro issues, my weight has been completely stable. This drop was a bit of a shock to everyone when I stood on the scale. Not to mention lack of appetite and the anxiety. Its not as if though people are going out of their way mentioning I am ill. My gf and close friends stated they wouldn't know I was ill unless I mentioned it. I don't have panic attacks in public. I still attend events with friends and enjoy them. I am a PhD student and my grades are whats expected by my department. Whenever I see a doctor or think of my health, however, I go off. vCJD has been a fear of mine for years. When I was in 6th grade I went on a 2 year no beef diet. I repeated this again from 2006-2008.

If people in my profession discovered my health is my greatest fear, I would be shunned in the line of work I do. It doesn't keep me from performing my tasks, however, and those who know me personally recognize this. I guess everyone fears something, I fear vCJD.

[Shntbehere]

http://www.ncbi.nlm.nih.gov/pubmed/21155168

Looks like gastro problems are associated with vCJD, including heartburn, which I have been experiencing.

[vardnas]

You know, you can either sit there and google your health issues 'til the cows come home or you can try and heed the advice of the people on this site who are making a good effort to try and help you.

You are young and this is a RARE disease. What makes you think vCJD is what you have? Why must you cling to the absolute worst case scenario when a whole rash of explanations (Chron's, celiacs, IBS, anxiety) are MUCH more common?

So far, YOU are the only one who thinks you have vCJD. Your doctors don't, no one here does, and yet you persist in believing it. Trust me, what you're exhibiting is classic anxiety thinking. CLASSIC.

[Vigilante]

If heartburn was a sign of cjd I must have lived with it for around 12 years already...nvCJD is a brain disease like no other it will kill you inside 2 years and leave you in a bed unable to move...I know you are seeking reasurrance because that is what us HA people do, it will make you feel better for about 5 mins then you will again think you have it.

Im going to say this one last time please believe me, YOU DO NOT HAVE CJD or NVCJD OR MAD COW DISEASE. I would be willing to put every penny I have on that. Please do not search for it anymore on google or anywhere else it will only keep this thought in your head.

[Shntbehere]

I am down to 135. Since seeing the doctor last week I lost 4 pounds......I am becoming utterly terrified. No food is staying on me at all.

[Vigilante]

Guess what? Anxiety and stress can cause weight loss...how? because the stress hormone cortisone is catabolic it will eat your muscle mass. How is your eating? and what are you eating? how many kcals? how tall are you?

[Shntbehere]

I am underweight, I will say that. I just got off the phone with my doctor and he is thinking Addisons Disease. My eating has been no different than it has been for years.

[Jade1]

Hi Shntbehere,

I actually have the exact same fears as you do....and since a couple of days ago my fears came back full force...

I have started being dizzy this past july with headaches etc...and I also started having muscle twitching in august...( the twitching as gone on and off) and I do have some gastrointestinal problems as well...my doctor says it s probably ibs. On top of that I have floaters in one of my eyes..and I read somewhere it could be related to CJD, since then I am terrified, and I'm constantly thinking about that...

I do feel like I have memory problems..I have trouble remembering names etc.

I am as scared as you are... sorry I cant help

[Jade1]

now I read the link you posted and related stories and I'm panicking...I have been diagnosed with anxiety..and I am taking Celexa 30 mg..it did help at first, but now I'm having twitches again..and I have weird numbness feelings/headaches

they say the disease always starts with depression/anxiety, with weird symptoms...I'm in panic mode right now... I'm so scared

[sixpack]

now I read the link you posted and related stories and I'm panicking...I have been diagnosed with anxiety..and I am taking Celexa 30 mg..it did help at first, but now I'm having twitches again..and I have weird numbness feelings/headaches

they say the disease always starts with depression/anxiety, with weird symptoms...I'm in panic mode right now... I'm so scared

yep that will do it reading other disease links posted.  it is the same as googling.

again anyone fearing they have this disease is only behaving the way a HA peep would.  In other words it is irrational to think you have this disease and only HA peeps would allow such a RARE disease to become relevant in their lives.  Just because it is a disease doesn't mean you'll get it.

[Shntbehere]

As it would appear I have lost even more weight. it is as if this never ends. Weight loss this severe cannot be caused by anxiety, PERIOD.

[vardnas]

Mmm, I dunno ... I lost about 30 pounds over-all due to anxiety. The first 15 or so within a week and a half.

[sixpack]

As it would appear I have lost even more weight. it is as if this never ends. Weight loss this severe cannot be caused by anxiety, PERIOD.

UM right, proof positive that you have that weird brain disease. 

come ON

btw--I lost two pounds over night from Tuesday to Wednesday this week.  back in my bad anxiety sessions I would lose 3 pounds over night often.  In '97 I lost 30-35 pounds. 

If you want to refuse to believe anxiety/stress can cause significant weight loss and choose to chalk it up to that ridiculously rare vCJD thing, you go right ahead.  However it is you that will discover you are incorrect and it is you that will discover that you are wasting your time worrying needlessly over diseases that you do NOT have rather than work on the disorder that you DO have.

remember there are two ways we can fool ourselves:    One is to believe what isn't true (in your case believing you have this neuro nasty or any neuro nasty really); the other is to refuse to believe what is true(underestimating what anxiety does to people and/or that you have unaddressed anxiety) .

[Vigilante]

Sorry but sixpack is correct.

I got myself a book today on getting over health anxiety, I think you would do well to get yourself such a book or see someone. Ok I believe I have an illness that will kill me too thats why Im here on the forums, but like most HA people here I do not go crazy when it comes to diagnosing other people or family or friends infact they usually come to me for advice.

Try not to think of pink elephants? now what are you thinking of?