anybody get it like this?

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anybody get it like this?

Postby eric on June 3rd, 2003, 9:41 pm

2.5 years ago I woke up and hit the floor with vertigo, if I kept my head straight it would stop. I could not look up or down or I would spin. ent says it is positional vertigo in time it will go away. then two weeks later I get a high fever for four days, now my calves are starting to tighten up and i start to feel twinges under the skin. after the fever I had twitches everywhere even behind the neck at the base of the skull. you could see the muscles moving under the skin. a feeling of weakness was present in the calves and triceps.
I thought to myself what the hell is this a double whammy. I started to look up any disease that could start like this. my first thought tettnus but that would be over in a week , I lived so onto the next thing. mad cow seamed worthwhile I looked it up and found out that there was another name for it, it was cjd. I read alot about people who had it from people who saw it and it sounded like I had it. I worried myself sick thinking that I might get this disease with a duration of 3 months its over. there are two types the other is vcjd which is 6 months too 2 years till death. fassiculations was one of the symptoms described and that sent me to the hospital. I was convinced that I had this ugly disease and there was nobody in the world who could shake the idea that I did not have it .I felt after reading all the symptoms that I could not think and It was time to say gooodbye. the fassiculations were so intense I thought it was over. well two years went by and the fassiculations slowed up alot , I thought hey this must be getting better then the nocturnal jerks started. this sent me into a frenzy it must be cjd it is the hall mark from what I read. I wondered around aimlessly for about 1 month confused about what the hell is going on I could not work I was as they say i was obsesive compulsive about the whole thing. then I met a friend who sister really had this disease and he said that he knows I dont have it but he has researched this and the man name is stanley prusner the noble prize winner. I called the ucsf memory center and they study this disease. I found out that an mri with a new type of scanner was able to find the signs of this disease in the early or late stages. with findings for only vcjd . it is called flair and the other is dwi.
I took the mri and sent it to them and they ruled out vcjd. it is like 97% acurate. so that was a relief. I dont have vertigo anymore but iI still have bfs and nocturnal myoclonus and feeling like my body is more electricaly charge then it was ,like feelings sparks different areas of the body. at night I get that funny vibration but im not vibrating myself.
well thats most of my story I try not to read up on anything cause I dont want to get it by thinking about it.
thanks eric
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Postby Jenn311 on June 4th, 2003, 1:21 am

Hi Eric!

Wow you have been through the ringer, eh? Sounds like you had a bad infection, possibly bacterial? Most of the time viral infections will run a low-grade fever while bacterial ones are noted for being quite high. Probably in the middle ear if you were having vertigo. A lot of people here have had the twitching start after a bad infection, usually viral. (most bacterial infections are preceeded by viral ones...) Have you been to see a neurologist? Or even your GP? It is not ever a good idea to self-diagnose, but it does sound a lot like you have BFS! Good for you for staying away from looking symptoms up on the web. That can cause you a lot of anxiety, as you found out.

Hope you are feeling better after having found this site!
Peace, Jen :wink:
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Postby tlotoxl on June 4th, 2003, 7:27 am

can't they also look in the tonsils for prions in order to diagnose cjd/nvjd?

in any case, it's obvious you don't have it. i have to admit that it worried me too, a few times, but since i've been twitching for over three years without any significant progression (though i have a bit of a tremor now... :( ) and no one's thrown me out of grad school yet, i guess it must be something else ;)
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anyone get this?

Postby eric on June 4th, 2003, 8:43 am

I went to two neurologist and they did all the test eeg,emg,mri,everything is normal. over the two and a half years I have been going thru hell thinking I picked up this terrible disease. wondering if it will progress further. I feel like I cant think as well as I used to . the doctors from california are the doctors for the world when it comes to vcjd. they swear on the mri and I hope their right.I have a son and wife and want to be here for them. My family tells me that it can be stress and from abuse as a child? I am adopted so it may have something to do with it. when I get scared I have trouble concentrating.
at 2.5 years Thats a long time. so I guess Im lucky that way. the doctors say that I am getting symptoms from looking them up. anyone out there feel that they are doing the same? I certainly have a lot of symptoms. constapation,slow digestion,dry flaky skin, week calves , exercise intolerence,tremoring, wierd week feelings in triceps and calfs. trouble thinking and staying on task. easily fatigued back of eyes. and fassiculations.
white tongue.
anyway just trying to find out what to do next? still alive!
thanks eric
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Postby Jenn311 on June 4th, 2003, 12:01 pm

Eric...

Sounds like you need to get control of your anxiety. All of the symptoms you mentioned sound like they are stress-related. have you tried any anti-anxiety or anti-depressant meds? You may want to at least try them and see if you can control your symptoms that way. If you can I would say that it might help you see the cause thus eliminating further stress.
Best, Jen
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Postby germandude on June 5th, 2003, 12:38 pm

hi eric, i have the same fear as you
since i live in europe and there was so much talking in the news about vcjd after they discovered the connection to bse i was always afraid to get it.
Last year in june i noticed while i was driving that some fingers felt numb.
So I looked up on the internet if vcjd presents like this at the beginning, and of course i found out that it did. I realized all kind of other stuff that i was convinced was related to vcjd, including depressions, loss of memory, lack of concentration and so on. I called the german specialists for vcjd to get some reassurance, but they couldn´t really help .
Two months after I realized the numbness in my fingers the twitching started, then i was really sure that i was going to die.
But nothing happend, the twiching became worse till christmas, even though i found this site in september and that really reassured me, but teh numbness went away.
I still have a lot of twitching but i don´t pay as much attention to it anymore, the funny thing is that one of my fingers feels numb again, it is exactly one year after this all started.
Though i´m a little worried again, i tell myself that it will go away again.
I think that so much things that we realize are things that everybody has but doesn´t realize because they don´t worry
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Postby Jenn311 on June 5th, 2003, 2:46 pm

I have to agree with you on the statement: "I think that so much things that we realize are things that everybody has but doesn´t realize because they don´t worry". Very true. I have also noticed that if I am able to ignore a lot of the things I used to obsess about they magically go away. So far that hasn't worked for my bills....but we can dream, can't we?
:wink: Jen
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fearing vcjd

Postby eric on June 6th, 2003, 2:25 pm

Thanks for posting your feelings, I have always in the last 10 years had anxiety really bad ,keyed up,wierd feelings in arms and leggs,dizzyness,lightheadedness, then it turned now I dont feel any thing like I used too. the back of my arms feel like they are nervous as well as my body .the nervousness is annoying in the arms it drives me nuts. the muscle is and had like an inflamed feeling too it.and the problems with trying to think are making believe that I have something. it feels like the body does not have tingling sensation anymore and the sex drive is not there anymore.dont know what to do . just sit and wait. on the 12 im having a spect scan anyone had that,there trying to see if lyme maybe the cause.if thats not it it may be that I had been abused as a child and im having phisical problems from it .
my childhood was preety severe with constant beatings. so there is that avenue.i guess ill have to see what comes up.
thanks eric.
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Postby lee on June 7th, 2003, 1:54 am

Eric,

I have had a lot of the same symptoms in my arms and hands that you describe. My forearms get really hot feeling and stiff. My twitching seems to be in my fingers more than anywhere else. Its a strange feeling. It's a very irritating feeling. I wouldn't say it's really painful, it's just irritating. I feel the urge to rub my hands and arms a lot and want to crack my knuckles to relieve the tension. My left side is definately worse than the right side. My hands and fingers tend to be jumpy when I use the mouse or keyboard. Do you get that? I try not to worry about it because I've had a couple of emgs which came back normal and have had mris which came back pretty normal, just some mild disc degeneration of the cervical spine. I have been in physical therapy as of late and have been told by the therepist that it sounds like nerve irritation. I get massages as part of the therapy and it really has helped.
I know that my muscles in my neck and shoulders are really tight and I think that they compress the nerves leading down my arms and irritate them. I know that when I'm stressed things get worse. So I try not to get so stressed out by taking time to do things I enjoy. Take care of yourself and do whatever you can to enjoy life.

Lee :wink:
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