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Old 04-17-2009, 08:28 AM   #1
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Scared I have a brain disease

Hello - I am scared I have some sort of terminal neuromuscular disease. I have been to my personal doc 3x in the past month but he comes up with "nothing" The first time he saw me he noticed some "red bumps" on the back of my throat and nasal discharge and gave me zithromax. I went back to see him again in 10 days and the "bumps" were still there he said "oh well" I guess there wasn't anything wrong. I went back to see him again a few days later and he said he didn't really notice the bumps or whatever they were.

So what are my symptoms? nothing to do with the throat.

I got really tired in the end of feb and took a day off work for the first time in a long time. I just felt like I couldn't keep going. I rested, and it didnt make me feel any better. My weight has been fluctuating and I was kinda fat around 250 lbs when I took that day off. Since then, these have been my symptoms:

Muscle twitches first when i was just drifting off to sleep, now all the time throughout my arms, legs, sometimes in face, and also strangely in my stomach. When I had gone to the doc, I had a pain in my stomach as well as pain in my neck (which i thought were lymph nodes and spleen). But now I think it was probably mostly muscular.

Now I have trouble eating, I feel sick all the time right when I'm about to eat, like it just doesn't want to go down or like i'm going to barf if i eat it. I am cold all the time, and have had bouts of severe shaking. When I take my temp its like 96 degrees or 97 degrees (doc said i just "run cold" but ive never noticed that before and there are times im at 98.6).

My blood pressure has dropped from 135/85 to 117/75 and at night sometimes its as low as 108/65. I have lost a lot of weight due to these weird feelings in my stomach and pains i keep getting and I am now down to 229 lbs which is a drop of 21 lbs in 6 weeks. (i have been trying to lose weight for my whole life and now it decides to drop off). about 2 months ago (and for the last whole year) I was in the gym working out feeling great, feeling strong and building a lot of muscle setting personal records bench pressing 260lbs and curling 40lb dumbells (was a lot for me anyway).

Past 6 weeks -> I have had muscle cramp feelings, tingling in my extremeties, last 2 fingers (pinky and ring on right hand) always feel cold and numb. My whole right side of my body just feels slightly more numb than my left. Every muscle all over feels like it is twitching. The pains in my neck have come and gone and recur on a daily basis. I usually feel much worse as the day goes on.

All blood/urine work was normal. Doc did a bunch of "physical" exams and deemed them all "normal" I just don't feel normal I feel like i'm going to die. Every time i calm my mind and think "you're ok" something pops up and I twitch or jerk or feel nausea. I have been perpetually thirsty and perpetually peeing.

The only disease I really think I have right now could be a brain tumor or CJD/vCJD - the symptoms for this start out with anxiety, depression, and end up with feeling weird in the extremeties, muscle atrophy, eventually loss of coordination, and death. I am SO TERRIFIED that I have experienced the beginning phases over the preceeding months and now all that lies ahead of me is loss of coordination, paralysis and death.

has anyone had any experience with any of this?

summary of my symptoms again:
muscle fatigue after minimal exercise
muscle twitchin all over
feel like right side is slightly numb
abdominal muscle fatigue/twitching/weird feeling
nausea while eating
transient pain in neck (front right side)
pain/fatigue that is ok in the morning getting worse as day goes on
muscle spasms/jolts while trying to get to sleep.
tired but wake up scared all the time
loss of weight without trying
feels like losing muscle not fat
general feeling that something is just very very wrong.

thanks a lot in advance.

 
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Old 04-17-2009, 03:39 PM   #2
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Re: Scared I have a brain disease

Sounds like a degenerative spinal disorder of some kind.

The ring and pinky finger problem is ulnar nerve dysfunction. It's origin can be in the wrist, (most commonly) the elbow, shoulder or cervical spine.

Given all your other symptoms an x-ray of your spine to check for degenerative changes seems in order. I'd ask your doc for a referral to a neurologist in any case.

Good luck, if any doctor tries to dismiss your symptoms by telling you you're just "anxious" remind them that anxiety is the natural response to uncertainty.

(Anxiety Disorder is a very real brain disorder that can cause a multitude of very real physical symptoms - but should only be considered after every other physical cause has been ruled out)

 
Old 04-17-2009, 09:05 PM   #3
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Re: Scared I have a brain disease

All of the symtoms you are experiencing are symptoms of Lyme Disease...you even have some of the "classic" ones if there is such a thing for Lyme.

Many people with similar symptoms have seen rheumatologists, endocrinologists, gastros, neurologists, etc. only to be told that nothing was wrong! It is not uncommon for a person with Lyme disease to see 12-24 different specialists before getting a correct diagnosis. Only a Lyme Literate Doctor is recommended for diagnosing/treating this conditon, some consider seeing other doctors a waste of time.

Lyme is a very complex organism and we don't know alot about it...and we don't have sophisticated tests to diagnose it...that's why it is very important to see the appropriate specialist.

There are documented cases of Lyme in every state in the Union...but in the Northeastern states, along the eastern coastal areas, and in a few states in the Midwest Lyme has reached epidemic numbers...but the doctors are still missing it!!

Bethsheba

 
Old 04-21-2009, 06:59 PM   #4
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Re: Scared I have a brain disease

Quote:
Originally Posted by worriedsick2009 View Post
Hello - I am scared I have some sort of terminal neuromuscular disease. I have been to my personal doc 3x in the past month but he comes up with "nothing" The first time he saw me he noticed some "red bumps" on the back of my throat and nasal discharge and gave me zithromax. I went back to see him again in 10 days and the "bumps" were still there he said "oh well" I guess there wasn't anything wrong. I went back to see him again a few days later and he said he didn't really notice the bumps or whatever they were.

So what are my symptoms? nothing to do with the throat.

I got really tired in the end of feb and took a day off work for the first time in a long time. I just felt like I couldn't keep going. I rested, and it didnt make me feel any better. My weight has been fluctuating and I was kinda fat around 250 lbs when I took that day off. Since then, these have been my symptoms:

Muscle twitches first when i was just drifting off to sleep, now all the time throughout my arms, legs, sometimes in face, and also strangely in my stomach. When I had gone to the doc, I had a pain in my stomach as well as pain in my neck (which i thought were lymph nodes and spleen). But now I think it was probably mostly muscular.

Now I have trouble eating, I feel sick all the time right when I'm about to eat, like it just doesn't want to go down or like i'm going to barf if i eat it. I am cold all the time, and have had bouts of severe shaking. When I take my temp its like 96 degrees or 97 degrees (doc said i just "run cold" but ive never noticed that before and there are times im at 98.6).

My blood pressure has dropped from 135/85 to 117/75 and at night sometimes its as low as 108/65. I have lost a lot of weight due to these weird feelings in my stomach and pains i keep getting and I am now down to 229 lbs which is a drop of 21 lbs in 6 weeks. (i have been trying to lose weight for my whole life and now it decides to drop off). about 2 months ago (and for the last whole year) I was in the gym working out feeling great, feeling strong and building a lot of muscle setting personal records bench pressing 260lbs and curling 40lb dumbells (was a lot for me anyway).

Past 6 weeks -> I have had muscle cramp feelings, tingling in my extremeties, last 2 fingers (pinky and ring on right hand) always feel cold and numb. My whole right side of my body just feels slightly more numb than my left. Every muscle all over feels like it is twitching. The pains in my neck have come and gone and recur on a daily basis. I usually feel much worse as the day goes on.

All blood/urine work was normal. Doc did a bunch of "physical" exams and deemed them all "normal" I just don't feel normal I feel like i'm going to die. Every time i calm my mind and think "you're ok" something pops up and I twitch or jerk or feel nausea. I have been perpetually thirsty and perpetually peeing.

The only disease I really think I have right now could be a brain tumor or CJD/vCJD - the symptoms for this start out with anxiety, depression, and end up with feeling weird in the extremeties, muscle atrophy, eventually loss of coordination, and death. I am SO TERRIFIED that I have experienced the beginning phases over the preceeding months and now all that lies ahead of me is loss of coordination, paralysis and death.

has anyone had any experience with any of this?

summary of my symptoms again:
muscle fatigue after minimal exercise
muscle twitchin all over
feel like right side is slightly numb
abdominal muscle fatigue/twitching/weird feeling
nausea while eating
transient pain in neck (front right side)
pain/fatigue that is ok in the morning getting worse as day goes on
muscle spasms/jolts while trying to get to sleep.
tired but wake up scared all the time
loss of weight without trying
feels like losing muscle not fat
general feeling that something is just very very wrong.

thanks a lot in advance.
Hey worriedsick,

I'm sorry for all the difficulties you've been having. A lot of the symptoms you're experiencing are non-specific...i.e. they don't point towards any single diagnosis. Also, given that your symptoms could be anything, I would caution you of just plugging things in to the internet because you'll really freak yourself out! (if you haven't already). Additionally, no doctor can take a list of non-specific symptoms, put them together and come up with a diagnosis. The trick is in situations like yours is to search through and try to find symptoms which are more specific. One thing that stands out as a fairly specific symptom is the weight loss. I'm assuming you're a young man? An involuntary 20lb weight loss is NEVER normal no matter how old you are. That symptom warrants further investigation.

Other things: have you had any objective fevers, shaking chills or soaking night sweats? Diarrhea? Have you had any asymmetric weakness in your body that is pronounced...i.e. you can lift a weight with your left hand, but can't lift that same weight with the right? Any changes in your vision OTHER than blurriness? Have you had any trouble walking? Have you had any trouble with your coordination? Any recent dental work? Do you have any previous health problems (and more notably any congenital heart issues). Any tremors? Increase in the number of daily bowel movements? Jitteriness? Warm, sweaty skin? Fullness in your neck?

Any recent trips anywhere? Any animals around the house? Anyone sick at your house? Any family history of thyroid problems? Malignancy? Neurodegenerative diseases?

In terms of physical examinations done by doctors: patients often get a false sense of security when these exams are normal, and along with this, patients who are hoping to find a cause for their symptoms are needlessly discouraged when a family doctor finds "nothing" on examination. The reason for this is because the physical examination at best has fair to poor SENSITIVITY. What that means is that, even if a physical exam is normal, it does NOT mean there aren't underlying abnormalities. In other words, the exam is not SENSITIVE enough to pick up certain things. In a case like yours, a good place to be evaluated is by a general internist. Your family doctor can do the initial investigations, but the more specialized stuff should be done by an internist. Significant weight loss of unknown origin is a common referral to internists, and this is something that should probably be undertaken in you.

If you have a chance, could you please try to answer all the questions I've asked above?

Last edited by harka; 04-21-2009 at 07:00 PM.

 
Old 04-21-2009, 07:05 PM   #5
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Re: Scared I have a brain disease

Oh, by the way, just wanted to let you know that at least ONE of your symptoms is completely normal--the jerks when drifting off to sleep. They are called hypnagogic myclonus, and it's a completely natural phenomenon.

 
Old 04-22-2009, 04:37 AM   #6
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Re: Scared I have a brain disease

Lyme is not a bad thought, but again, the symptoms (other than perhaps the 20lb weight loss) are not very specific, and can hardly be said to be classic for anything. Additionally, given that Lyme is a rare disease and there are a few other, much more common (and more serious things) that need to be ruled out first, the doctors' sights will be focussed elsewhere.

 
Old 04-22-2009, 05:37 AM   #7
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Re: Scared I have a brain disease

Quote:
Originally Posted by cgranulomatis View Post
Hey worriedsick,

I'm sorry for all the difficulties you've been having. A lot of the symptoms you're experiencing are non-specific...i.e. they don't point towards any single diagnosis. Also, given that your symptoms could be anything, I would caution you of just plugging things in to the internet because you'll really freak yourself out! (if you haven't already). Additionally, no doctor can take a list of non-specific symptoms, put them together and come up with a diagnosis. The trick is in situations like yours is to search through and try to find symptoms which are more specific. One thing that stands out as a fairly specific symptom is the weight loss. I'm assuming you're a young man? An involuntary 20lb weight loss is NEVER normal no matter how old you are. That symptom warrants further investigation.

Other things: have you had any objective fevers, shaking chills or soaking night sweats? Diarrhea? Have you had any asymmetric weakness in your body that is pronounced...i.e. you can lift a weight with your left hand, but can't lift that same weight with the right? Any changes in your vision OTHER than blurriness? Have you had any trouble walking? Have you had any trouble with your coordination? Any recent dental work? Do you have any previous health problems (and more notably any congenital heart issues). Any tremors? Increase in the number of daily bowel movements? Jitteriness? Warm, sweaty skin? Fullness in your neck?

Any recent trips anywhere? Any animals around the house? Anyone sick at your house? Any family history of thyroid problems? Malignancy? Neurodegenerative diseases?

In terms of physical examinations done by doctors: patients often get a false sense of security when these exams are normal, and along with this, patients who are hoping to find a cause for their symptoms are needlessly discouraged when a family doctor finds "nothing" on examination. The reason for this is because the physical examination at best has fair to poor SENSITIVITY. What that means is that, even if a physical exam is normal, it does NOT mean there aren't underlying abnormalities. In other words, the exam is not SENSITIVE enough to pick up certain things. In a case like yours, a good place to be evaluated is by a general internist. Your family doctor can do the initial investigations, but the more specialized stuff should be done by an internist. Significant weight loss of unknown origin is a common referral to internists, and this is something that should probably be undertaken in you.

If you have a chance, could you please try to answer all the questions I've asked above?
have you had any objective fevers, shaking chills or soaking night sweats?
fevers - no i dont think so but i have had "chills" where my whole body would shake and i felt like i couldnt get warm (albeit it was cold) but i would take my temp under my arm/ in mouth and it would be like 95-96.

Diarrhea? - yes i had it pretty bad about a month ago when this all started not so much now.

Have you had any asymmetric weakness in your body that is pronounced...i.e. you can lift a weight with your left hand, but can't lift that same weight with the right? My left side is generally weaker than the right but its always been that way. although now my right side feels week (but in terms of lifting weight my right side seems to be just as strong)

any changes in your vision OTHER than blurriness? not that i can tell other than every once in a while i feel like the lights flicker (although i think they did flicker those times and it might just be in my head)

Have you had any trouble walking? not that i can tell although i am terrified of this.

Have you had any trouble with your coordination? not that i can tell but once again terrified of this

Any recent dental work? no

Do you have any previous health problems (and more notably any congenital heart issues). not that i am aware of

Any tremors? i feel like my hands are shakier than usual

Increase in the number of daily bowel movements? yes i used to go either once/day or not for a couple of days but now i go about 2x/day and its always smaller.

Jitteriness? yes

Warm, sweaty skin? no

Fullness in your neck? just the strange muscle-like pain.

Any recent trips anywhere? no

Any animals around the house? no

Anyone sick at your house? no

Any family history of thyroid problems? Malignancy? Neurodegenerative diseases? no


thanks for the help.

 
Old 04-22-2009, 06:36 AM   #8
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Re: Scared I have a brain disease

You have the symptoms of Lyme Disease....other diseases may present with these symptoms also, but because your doctor is finding "nothing" I'd suggest doing some serious reading about Lyme.

We don't have good tests for Lyme and for that reason, a Lyme Literate Medical Doctor is recommended for diagnosis and treatment.

And no, you don't have to be bitten by a tick to get Lyme.

Bethsheba

PS You might want to review posts on the Lyme boards...there are many similar posts there.

Last edited by bethsheba; 04-23-2009 at 11:09 AM.

 
Old 04-22-2009, 08:44 AM   #9
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Re: Scared I have a brain disease

Quote:
Originally Posted by bethsheba View Post
Welcome to the boards, Worriedsick!

You have the symptoms of Lyme Disease....other diseases may present with these symptoms also, but because your doctor is finding "nothing" I'd suggest doing some serious reading about Lyme.

We don't have good tests for Lyme and for that reason, a Lyme Literate Medical Doctor is recommended for diagnosis and treatment.

And no, you don't have to be bitten by a tick to get Lyme.

Bethsheba

PS You might want to review posts on the Lyme boards...there are many similar posts there.
i am still msotly scared that i have mad cow disease. Don't ask me why I feel like my symptoms line up but reflecting back on the past several months, I have felt many psychiatric symptoms as well as physical.

i have been depressed, anxious, you name it. i have cried at work thinking about deaths in the family and about the uncertainties of the future.

I have weird feelings in my hands and in my legs. the slight unsteadiness with my hands sometimes clicking the wrong thing on a webpage - i feel like i used to be very accurate. these muscle twitches, the sleep disturbances. the strange dull muscle ache in the front of my neck, the dull muscle ache in my abdomen. the abdominal cramps etc. the strange feelings of fatigue, the "clean" physicals and bloodwork.
all these things seem to be multi-systemic. I just sit here and feel like im waiting for the next phase to drop - will I wake up one morning and start bumping into walls and slurring my speech and begin the progression into a vegetable? Every morning I wake up in a panic and "Assess" my situation.

 
Old 04-22-2009, 01:21 PM   #10
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Re: Scared I have a brain disease

Quote:
Originally Posted by worriedsick2009 View Post
...I have felt many psychiatric symptoms as well as physical....
Lyme is a multisystem disease which means that once it is in the blood stream it can be circulated throughout the body, and it can cause problems in many different body organs/systems...so there could be skin problems, digestive problems, respiratory problems, bone/joint/cartilage problems....there can be problems wherever the bacteria decides to live. When the bacteria gets to the brain, depending on where in the brain it "settles", it can cause problems with sleep, vision, hearing, sensations, talking, thinking, moods, you name it. Sometimes it even causes early onset dementia....but many of these symptoms can be stopped or reversed if diagnosed and treated soon enough. If the condition isn't diagnosed or treated, chronic illness and sometimes death are possible.
But the good news is Lyme can be treated. Symptoms can ease if not disappear....again, there are people with similar symptoms on the Lyme Boards.

Bethsheba

Last edited by bethsheba; 04-22-2009 at 01:22 PM.

 
Old 04-22-2009, 02:18 PM   #11
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Re: Scared I have a brain disease

Hi Worriedsick. You sound like you might just be worrying yourself sick. The chances of you getting Creutsfeldt-Jakob disease are so rare that you're more likely to die from being hit by a meteor. The only recent case of CJD was from someone eating a deer with the disease somewhere in Colorado or Wyoming.

Have you had any kind of transplant involving eye or brain tissue? Brain or spinal surgery? Shots of growth hormones? A family history of CJD?

This is an incredibly rare disease but other disorders share similar symptoms. I've had Lyme twice and so has my husband and with all respect to the other poster, it doesn't sound anything like what he or I have experienced. We live in an area that is considered epidemic with Lyme so are very familiar with what is can and cannot do. Spinal cord compression in the upper neck shares more symptoms with you than Lyme. Most people think a cervical spine problem brings tons of pain but I had no pain. I had cervical spondylosis and was slowly but surely becoming paralyzed due to 3 disks that had ruptured and were pressing on the spinal cord. Had they pressed on the nerves exiting my neck I would have had pain but when they hit the cord instead, all you do is slowly go numb and lose function until you are paralyzed.

I'd see a neurologist if I were you but don't go in with a diagnosis in mind. Let him/her do a full work up and then decide. It's your lack of quantifiable results that makes it hard. A neuro can figure out how much function is lost, how the nerves are affected, which nerve endings or what areas of the brain. I have a bad neck and it first showed up in my toes. I get nausea as it affects the flow of spinal fluid in the brain and spine. You never quite know what is causing what. So go see a pro and stop thinking the worst. There a lot of other treatable and curable things to consider before you worry about CJD.

good luck and hugs............Jenny

 
Old 04-22-2009, 02:35 PM   #12
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Re: Scared I have a brain disease

Quote:
Originally Posted by worriedsick2009 View Post
have you had any objective fevers, shaking chills or soaking night sweats?
fevers - no i dont think so but i have had "chills" where my whole body would shake and i felt like i couldnt get warm (albeit it was cold) but i would take my temp under my arm/ in mouth and it would be like 95-96.

Diarrhea? - yes i had it pretty bad about a month ago when this all started not so much now.

Have you had any asymmetric weakness in your body that is pronounced...i.e. you can lift a weight with your left hand, but can't lift that same weight with the right? My left side is generally weaker than the right but its always been that way. although now my right side feels week (but in terms of lifting weight my right side seems to be just as strong)

any changes in your vision OTHER than blurriness? not that i can tell other than every once in a while i feel like the lights flicker (although i think they did flicker those times and it might just be in my head)

Have you had any trouble walking? not that i can tell although i am terrified of this.

Have you had any trouble with your coordination? not that i can tell but once again terrified of this

Any recent dental work? no

Do you have any previous health problems (and more notably any congenital heart issues). not that i am aware of

Any tremors? i feel like my hands are shakier than usual

Increase in the number of daily bowel movements? yes i used to go either once/day or not for a couple of days but now i go about 2x/day and its always smaller.

Jitteriness? yes

Warm, sweaty skin? no

Fullness in your neck? just the strange muscle-like pain.

Any recent trips anywhere? no

Any animals around the house? no

Anyone sick at your house? no

Any family history of thyroid problems? Malignancy? Neurodegenerative diseases? no


thanks for the help.
Hey again worriedsick,

I agree that something like CJD is very unlikely and in fact I'd venture to say almost impossible. Bethsheba is a big proponent of Lyme disease, and she makes a good case--all the symptoms could fit--but before falling back on that diagnosis, it is important as I said earlier to rule out other more common (and more immediately dangerous) things.

The reason your doctor "isn't finding anything" is not because there is necessarily nothing there, but it's because you require a specialist to evaluate you. Family doctors are good at picking up abnormalities and also for the maintenance of good health, but that's largely where their training stops. As I said before, a general internist should do a large screen on you for conditions that range from a problem as simple as hyperthyroidism to a chronic infection such as bacterial endocarditis or an endemic mycosis and also to rule out a malignancy. I don't want to alarm you, but your clinical presentation is very concerning, and before you start wasting your time looking for someone who will try to look for something you probably don't have, you need to see someone versed in internal medicine to rule out things that are more immediately dangerous to you.

 
Old 04-22-2009, 03:04 PM   #13
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Re: Scared I have a brain disease

Quote:
Originally Posted by jennybyc View Post
Hi Worriedsick. You sound like you might just be worrying yourself sick. The chances of you getting Creutsfeldt-Jakob disease are so rare that you're more likely to die from being hit by a meteor. The only recent case of CJD was from someone eating a deer with the disease somewhere in Colorado or Wyoming.

Have you had any kind of transplant involving eye or brain tissue? Brain or spinal surgery? Shots of growth hormones? A family history of CJD?

This is an incredibly rare disease but other disorders share similar symptoms. I've had Lyme twice and so has my husband and with all respect to the other poster, it doesn't sound anything like what he or I have experienced. We live in an area that is considered epidemic with Lyme so are very familiar with what is can and cannot do. Spinal cord compression in the upper neck shares more symptoms with you than Lyme. Most people think a cervical spine problem brings tons of pain but I had no pain. I had cervical spondylosis and was slowly but surely becoming paralyzed due to 3 disks that had ruptured and were pressing on the spinal cord. Had they pressed on the nerves exiting my neck I would have had pain but when they hit the cord instead, all you do is slowly go numb and lose function until you are paralyzed.

I'd see a neurologist if I were you but don't go in with a diagnosis in mind. Let him/her do a full work up and then decide. It's your lack of quantifiable results that makes it hard. A neuro can figure out how much function is lost, how the nerves are affected, which nerve endings or what areas of the brain. I have a bad neck and it first showed up in my toes. I get nausea as it affects the flow of spinal fluid in the brain and spine. You never quite know what is causing what. So go see a pro and stop thinking the worst. There a lot of other treatable and curable things to consider before you worry about CJD.

good luck and hugs............Jenny
only problem with this is: I have eaten deer on many occasions over the past 8 years. I have also had caribou and moose meat from Canada/U.S. I also had McDonald's in France some time in 1995 as a child. I have also been eating a lot more meat and getting adventurous with respect to the creatures I ingested over the past 8 years.

 
Old 04-22-2009, 03:09 PM   #14
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Re: Scared I have a brain disease

Quote:
Originally Posted by cgranulomatis View Post
Hey again worriedsick,

I agree that something like CJD is very unlikely and in fact I'd venture to say almost impossible. Bethsheba is a big proponent of Lyme disease, and she makes a good case--all the symptoms could fit--but before falling back on that diagnosis, it is important as I said earlier to rule out other more common (and more immediately dangerous) things.

The reason your doctor "isn't finding anything" is not because there is necessarily nothing there, but it's because you require a specialist to evaluate you. Family doctors are good at picking up abnormalities and also for the maintenance of good health, but that's largely where their training stops. As I said before, a general internist should do a large screen on you for conditions that range from a problem as simple as hyperthyroidism to a chronic infection such as bacterial endocarditis or an endemic mycosis and also to rule out a malignancy. I don't want to alarm you, but your clinical presentation is very concerning, and before you start wasting your time looking for someone who will try to look for something you probably don't have, you need to see someone versed in internal medicine to rule out things that are more immediately dangerous to you.
Also, I got very nervous about heart problems last december and saw a cardiologist (i was 25lbs heavier at the time and desperately wanted to exercise but was scared of a heart attack). He did ekg, stress test, ultrasound, a blood test as well as a holter. all of these turned out "normal" (MY Bp was a little high at the time in the 130s as it had been since I was in my teens - which is why im so scared now that its in the normal range)

 
Old 04-22-2009, 06:19 PM   #15
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Re: Scared I have a brain disease

Hey Cgranulomatus....see you a lot on the boards and you sure know your stuff. Nice to know you're here.

To Worriedsick....you seem to be convinced you have a brain disorder so why haven't you seen a neurologist? And it seems as if your primary care doc doesn't see the need to probe further. So go see a neuro on your own. Do you have to get a referral? If your primary won't send you, then go over his/her head and demand it. You have symptoms that no one seems to be taking seriously and you need to be more aggressive in being heard.

I'll share a lesson I learned in seeking help. I knew I had a bad neck and my neurologist said I needed surgery yesterday. My spinal cord was the shape of a pancake. The first neurosurgeon she sent me to was brand new in the area and she asked if I'd be her guinea pig and check him out. I called and she sent her letter and we heard nothing. Then I called and they realized they'd forgotten to call me. I had an appointment the next day at 9am.

Well, I feel pretty good at 9am. I'm well rested, someone else did the driving so I could rest my neck and my strength is as good as it's going to be all day. So this guy saw no problems and blew me off after 15 minutes. So my neuro set me up with someone else she knew and told me to go late in the day and make sure I worked hard all morning before driving up to his office 2 hours away. Sure enough, I got there weak, staggering gait, numbness all over the place....the way I am 75% of the time. He diagnosed me immediately and scheduled surgery. Moral of the story....if you have a bad time of the day, that's the time to be seen. Going in feeling good is bad. You want make sure you are at your worst. Don't push them towards what you think is wrong...let them do the diagnosing. Otherwise you'll get a reputation of being a hypochondriac. Just honestly list your symptoms...write them down and the time of day they occur and if anything in particular makes them occur or worsen. Gather what tests results you have so far even if they are negative. Negative tests tells them something too. List where you've traveled and what unusual things you've eaten. My brother-in-law just came back from the Phillipines with a bladder infection he picked up there and wouldn't go away. They discovered he has 2 bladders.....one normal one and another attached to the back that is 3 times larger and acts as an overflow. So when he gets a bladder infection...he REALLY gets a bladder infection! But his strange anatomy combined with his travel gave the docs enough info to know he needs long term treatment for a bladder infection as he has 2 of them.

Think of an illness as a giant puzzle and you need a puzzle solver. A Dr. House without the Vicodin. So give him or her the pieces and let them try to solve the puzzle. We all want to know NOW what is wrong and sometimes we just have to wait it out.

Good luck........................Jenny

 
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