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Old 08-05-2007, 10:02 AM   #1
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Undiagnosed! What could this possibly be?

HI I LIVE IN TEXAS. HERES MY STORY.
Sometime in November one day I went out with my boyfriend, my sister and her boyfriend. At night we went back to my sistersí house. It was raining and I was driving. My tires skid into a puddle of water and I got a flat tire and I crashed into a pole. As I ran into the pole I felt my head and neck moved back and forth with great force. I never did go to the doctor that night. After the accident I felt fine. A couple of days later I had a minor cold. I had drippy nose and I coughed a lot. I coughed for several days and took medicine for the cold. One day I took medicine and went to bed. I woke up in the middle of the night feeling nauseated and coughed a lot. I threw up so much that I threw up blood. I was scared and my stomach hurt a lot. I went to the Dr. and I told him what happened and he sent me to have a test done over my stomach. I went back with my Dr. after I had my test done and he said I had acid reflux. He told me it was minor. He gave me pills for that.

After a week I felt normal again. My cold was gone. Around two days later I had the worst migraine ever. My migraine lasted all day. I took Tylenol and it helped a little. I also put ice on my head. After a couple days I started getting throbbing headaches. It was less painful then the migraine I had. My headaches hurt so much that the front of my head felt tingly and became numb at times. With my headaches I also felt a strong pressure on my chest. I felt like it was difficult to breathe. The pressure would go and come back in times whether I was at home, at school, driving, etc. My mom mentioned it was heartburn. While I felt this I would drive my car. For a couple of days I thought my car had a burning smell. I thought I smelt gas or something similar to it. While I was driving I felt like it was difficult to breath and my heart was beating really fast. I thought I was going to have a stroke. At times my hands became numb. I opened the windows but that didnít help. A couple of times I stopped driving when I was on the road and parked somewhere because I ran out of breath and could not concentrate on the road. At times I also burped a lot and had a strange taste in my mouth. It tasted like gas. When I burped I tasted it and smelt it coming out from my mouth. I told my parents and they drove my car for a week. They told me they felt and did not smell anything. They said the car was fine. I drove my car again and felt the same thing. One day I was at home and felt like I could not breathe. My parents took me to the clinic. The doctor and nurse checked my oxygen level and blood pressure. It looked normal. They also took an x-ray of my chest and an EKG. It all came back normal. I told the Dr. about the taste and smell of gas I had coming out of my mouth. I told them that I thought it might be carbon monoxide. He decided to do a blood test to see if it was a possibility. A week passed by and I got a call and my blood test came back normal. All I had was low potassium, but this was not anything major. I kept having the same symptoms. More weeks passed by.

I went to rent a movie one day with my boyfriend. Inside the store I felt out of breath. My hands started tingling, so we decided to leave. When we got in the car I felt lightheaded and out of breath, like someone was pressing hard against my chest. Beside my hands feeling tingly, I also felt my face, chest, and legs feeling tingly. It also felt like my veins and the inside of my body was cold. My boyfriend told me I looked very pale. I felt like I was going to pass out. So I told my boyfriend to take me to a different clinic then the one I went to last time. When I got there, once again, they checked my oxygen level and blood pressure and it all came back normal. They also did another x-ray of my chest and an EKG. These tests also came back normal. The Dr. told me what I had were panic attacks. He gave me medicine for my panic attacks. A couple weeks have passed by and I felt better. I learned to control my attacks. The Dr. said I had a lot of stress, even though I did not feel it. I told him I have a calm life. After the Dr. told me this, I dropped two classes out of four from college.

I felt a little better until I freaked out. My boyfriend and I were at my house getting ready to eat Chinese food at a restaurant. I had a bad headache and I felt my chest pressing again. The inside of my chest felt cold. All at once I felt like a lot of tiny needles from the top of my head falling down until I felt the inside of my head completely empty and numb. It felt like a balloon floating. I was so scared I thought my skull or brain was going to fall. My boyfriend calmed me down. From then my head has been numb. It is just the inside of my head. I felt like my head is going to fall off, so I held my head with my hand a couple of weeks.

One day I went to stay with my sister at her home. I began to have a headache so I went to bed. I tried to sleep but my headache got worse that it woke me up when I was barely falling asleep. I felt like pins and needles were scratching and cutting the inside of my head, esp. on the back of my eyes. I could not stand the pain. My sister took me to the emergency room. I waited about 6 hours and the pain was unbearable. I never cried so much in my life. When I saw a Dr. he put an IV on me because he said I looked dehydrated. He gave me pills for the pain and I went home. I took them and they sort of helped.

A couple days later, I felt pain around my eyes, cheeks, ears, and nose. I also felt like something cold was dripping from the inside my head. My mom thought it was mucus. She thought it could be a sinus infection. So I put on nose spray for about two weeks. The headaches got worse that I could not sleep at night. I decided to go back to the clinic and the Dr. gave me sleeping pills, Vicotin for the pain and he decided to give me a CAT Scan to see if I had a sinus infection. I got blood drawn out to see if my thyroid was normal, to check my blood count, and for other tests. I took the pills and I felt less pain. I could sleep now at night. In about a week, I went back to the Dr. and he told me my CAT scan was normal. I told him I still have pain. I told him I felt like I had something thick and sharp, needlelike sensation, poking the back of my eyes and cheeks. It felt like something was pulling my eyes out. It was like wires were wrapped around my eyes. The Dr. told me he was going to do an MRI. I went to have my MRI done and I did not get my results until two weeks later. During one of those weeks, I went to vacation with my family. When we got there my head started to hurt horribly, painfully bad. I felt that I had something falling from the top of my head. It felt like many sharp pins and needles, at once, were falling and piercing and cutting all the way through the inside of my eyes, nose, the sides of my ears and my tongue. When I felt this, it also had a burning sensation. It felt like the inside of my head was on fire. I had this feeling all day and all night. The pain was so bad I was shaking and could not stop crying. The next day in Mexico I decided to go see a neurologist. He told me based on my symptoms that it sounds like it could be epilepsy with a complicated migraine. He sent me to the hospital to do an MRI and to have an EEG. I did these tests and went back to him. He told me everything came back normal. I told him I felt the inside of my head completely empty and numb, like there was just a hole inside my head. My head felt wobbly. I also felt like a lot of tiny needles were falling down from the top of my head. When this happened I felt the needles or whatever sensation it is giving me shocks or static, or electricity. I felt the shocks inside my head and also at the bottom of my feet. It felt so weird and painful. The Dr. told me, once again, based on my symptoms that the closet thing I could have is epilepsy. He thought I might get seizures. He gave me medicine. He gave me Topomax and Keppra for epilepsy and some medicine for the pain.

When I got back to USA I went to the clinic for my MRI results. The Dr. told me my results came back normal. He told me to not take anymore of the medicine I was given in Mexico because I do not have epilepsy. He said this medicine was not necessary and it could ruin my digestive system. He sent me to have a urine test and I had a minor infection. He gave me pills for that. He also gave me floxentine pills. He thought that everything I had was caused by stress, but I believe its something else besides stress. He said he was going to fax some papers so that I could see a neurologist and have an EEG done. I still have not seen a neurologist nor have my EEG done yet. But I should soon.

I only took the pills the Dr. gave me for a couple of days because my stomach hurt a lot. I also lost my appetite. I hardly ate food. I also could not sleep during those days. I went back to the Dr. and he told me to stop taking all the medicine I was given. He gave me Nexium pills for my stomach. He told me not to take any other pills except Tylenol or Ibuprofen for my headaches. He also draws blood to see if I had any stomach problems. I started taking my pills and my stomach felt better and I could sleep at night now. Since then until now I have felt different sensations inside my head, but being completely numb and empty. My head has felt completely numb for around two months. One day I felt like there were wires inside my head. I felt like there were pins and needles, I felt like my head was on fire. I felt like I had air or my head was cold inside. I had a sensation like wires were pulling my skull or my head out of my head. I had a sensation like water falling from the top of my head. It felt cold. I also had itching and tingly sensations inside my head. Almost everyday I have different sensations inside my head. Some days I would have ringing in my ears and my vision would see white spots for just a second.

Recently, my head feels like the numb sensation I mentioned. I am sometime still feeling like the sensation that something is falling from the inside of my head, sometimes a cold sensation. This sensation I have also felt in my neck and now I also feel my neck empty or numb. With this my neck hurts a lot. It feels like my head is heavy and wobbly and makes my neck and shoulder hurt. I also feel like my body feels heavy, like it is tired. But I can move my body well, function well; see well, do all the normal stuff. I never had a fever either.

Now it is July 2007 and I have gotten new symptoms. I get chills at night inside my whole body and sometimes during the day, I feel congested, my chest gets really tight. My throat also hurts. Sometimes I canít swallow my food. My throat feels like it wants to go to the back of my neck. I also canít sleep because I have to wake up every 20 min. to go pee. I think I have a bladder infection. One day I couldnít sleep the whole night because I felt like I had water trapped inside my chest, I tried to sleep but I felt like I couldnít breathe and it woke me up over and over again. I burped a lot. I also have ringing in my ears. My ears hurt sometimes too. My work had a health fair and I had a test done for my ears. I had to do a balance test and I had to close my eyes and I feel over to the side twice. So the Doctor told me I might have a severe ear infection and that I should get it checked out. One day I freaked out at work because I had a lot of pressure in my head and I felt like a pop sensation, like it was expanding and I had the sensation of something cold falling from my head. After that I have gotten big horrible headaches and a lot of pressure in my head. It feels like a pump, pumping air into my head and it just wants to shoot up. My neck hurts a lot. It feels strain, wobbly. I think my head has so much pressure because of my neck feels weak. My head shakes a lot and when that happens my body does too. I went to the Doctor again and he gave me tests to see if I had a throat infection and a bladder infection. He told me I did have a minor infection in my throat. But he also told me I had a severe bladder infection. I told him how I have been feeling. He set up an appointment so that I could see a throat and ear specialist. He also set up an appointment so I could have an EEG. As I mentioned before I saw a neurologist before and he told me I had stress (I believe it is not stress) and it would go away in 3 weeks but it has been longer and I felt like I have gotten worse and that is why I have not got an EEG done before. So the doctor gave me antibiotic for my bladder infection and just in case I have an ear infection.
Today July 26, 2007 around 7:00 p.m. I went outside to walk around the block with my boyfriend. As I was walking I felt my head very cold and had a sensation of something inside my head dripping down like liquid and I freaked out. When I felt this, I felt my head getting number and air pushed inside my eyes and all around my head. It felt like a balloon expanding and when I felt something moving around and falling down from the top of my head, I thought my brain was going to fall down or my skull just wanted to slip down. I felt alot of pressure on the back and on the front of my head. Could this sensation be the cause of the medicine I am taking (Amoxicillin) or could my head react to that sensation because of a panic attack.
I still have a sensation like something cold and lots of it dripping from the inside of my head. My head also have alot of pressure and also around my eyes. It has so much pressure around my skull it feels like my head wants to pop off. I also have pressure around my nose like someone wants to pull it off.
I have so much pressure on the back of my neck it feels like my muscles are squeezing really tight and it also feels like its squeezing my throat and it sometimes it hard for me to breathe. My ear also hurts like its trobbing and also i feel like my eyes are burning. I also wake up exhausted, like my body is detached.
I HOPE AFTER I HAVE THESE TESTS DONE SOMEONE WILL FIGURE OUT WHAT IS WRONG WITH ME. I AM SO SCARED. I WISH I COULD JUST SWITCH PLACES WITH SOMEONE SO THAT THEY COULD KNOW HOW IM FEELING. IS THERE ANY WAY THAT THE MRI (WHICH I TOOK TWICE) AND CAT SCAN COULD HAVE AN ERROR AND I HAVE SOMETHING WRONG IN MY HEAD OR IS IT 100% EXACT? IF IT WAS SOMETHING SEVERE I GUESS I WOULD BE DEAD BY NOW. COULD THIS ALL BE CAUSED BY STRESS? THE WORST FEAR I HAVE IS DYING. I JUST HOPE NO ONE IS GOING THROUGH WHAT I AM.


Medicine I have tooken:
Vicodin
Naproxen 500 mg
Uniclar nose spray
Keppra Levetiracetam 500 mg
Talpramin Imipramina 25 mg
Topomax 100 mg
Lorazepam 0.5 mg
MetoCLOPramide 10 mg
Nitrofurantoin Monohydrate Macrocrystals
Alprazolam 0.25
Floxetine 10 mg
Nexium
Amoxicillin

 
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Old 08-05-2007, 10:18 AM   #2
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Re: Undiagnosed! What could this possibly be?

I can answer one thing, NO one test is 100% not even close. And someone might tell you different but even if there is a test that doctors claim is 100% there's human error so no test is 100%.

 
Old 08-05-2007, 03:31 PM   #3
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Re: Undiagnosed! What could this possibly be?

Hey there! I just have to say that I have NO idea what could even possobly be wrong with you from your symptoms. I am sososo sorry your are going through all of this with no answers. I am sure that is so frustrating!!!
Obviously there is something going on that needs to be looked at further and more in depth. Definitely get an appt. with a neurologist if you haven't already. Perhaps you could have another CT scan or something?!?
Good luck to you and I really hope that you can get some answers and some relief from all of that soon!

 
Old 08-05-2007, 03:47 PM   #4
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Re: Undiagnosed! What could this possibly be?

Hi jolener. I do not know of any Lyme doctors in Texas. The closest one I know of is Dr. Charles Crist in Springfield, MO. I hope you can see someone soon. You may want to see if there are any support groups in your area.

The Lyme board on this site is great.

Good luck!

 
Old 08-05-2007, 04:07 PM   #5
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SOPHIABELLA HB User
Re: Could what I have be fibromyalgia?

You poor poor thing! What a nightmare you have been through. I read your entire post, and forgive my short term memory loss, but did you say you had an mri of your brain? If not YOU SHOULD! Also, how about an MRI for any herniated dics in your neck? My husband has 3 ruptured dics in his neck and has the tingling you describe. Also, what about the obvious whiplash that you have? You can buy a neck brace at any local store and it may give your neck the rest and support it needs. AFTER the MRI's *IF* they come back negative, I would see a chiropractor. It does not sound like Fibro at all, all though it always has the chance of turning into Fibro in the future. Also, when your tingling starts, and the other scarey symptoms that could create an anxiety attack too. It is a vicious circle. When you are in the middle of an anxiety attack, try to go ourside your thoughts of panic. Look around you for something solid, like a tree, look at the tree and focus, then look at the leafs and focus, then look at the bottom of the tree and see what is there and focus only on that and so fourth. It has helped me in the middle of an attack.
Good luck with everything, and let me know how everything goes! Take care,,Kari

 
Old 08-05-2007, 06:13 PM   #6
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Andrea84 HB User
Re: Undiagnosed! What could this possibly be?

I'm assuming that all these tingly strange symptoms occurred after the accident. I think you need to see a really top neurologist to figure this out. It might be a combination of factors but a complete neurological exam has to be done. Eventually a competent doctor will sort it out. Wish you the best.

 
Old 08-06-2007, 08:14 AM   #7
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Re: Undiagnosed! What could this possibly be?

Hi it sounds like you're having full blown panic attacks which can cause all of those symtoms. Look it up on the internet and you will see all the crazy things it causes. Take a deep breath, relax. There is nothing wrong with you, although it feels like you might die. I know the feeling well. I've had panic attacks for over 20 years. Of course I've learned how to control them and also live with them. There are very scary and I ended up in the ER several times before my diagnosis. I've been on medication since and I feel fine now. Good luck to you.

 
Old 08-06-2007, 10:27 AM   #8
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Re: Undiagnosed! What could this possibly be?

I am a hidden hyperventilater and it took 10 years to find a doctor who recognized the problem.

I went to Dr. Kaplan at Southwestern Medical School in Dallas, Texas. I believe he is retired but other doctors there will be able to proper diagose the problem you are having.

My instructions were to re-breathe in a paper sack 5 minutes every hour and did so for 3 months. My problem was not due to stress but for some unknown reason my breathing got off track.

Re-breathing in a paper sack will help calm the nervous system.

I do not know where you live, but a medical school would be your best bet for a good doctor. You may also go to Scott & White Hospital in Temple, Texas. They are a diagnositc type hospital.

 
Old 08-17-2007, 10:09 AM   #9
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Re: Undiagnosed! What could this possibly be?

An MRI can come back normal for seizures. You should get an EEG to determine if you have seizures or not.

 
Old 08-29-2007, 10:51 AM   #10
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Re: Undiagnosed! What could this possibly be?

Yes, you were totally misdiagnosed. I can't stress it more. What I think it is, had some symptoms before others i'm using what people I've known have gone thru. For example, This may NOT be the case, as they are different in how it came about. I do not want to scare you, but my dh friends wife, is dying and her organs are shutting down like kidneys, liver etc... all of them are shutting down. Her problem was she had tumor behind her eye and took it out, found it was benign it was giving her major headaches, and more.... Afterwards from surgery she had all sorts of complications and they believe the docs botched the surgery and are trying to cover it up now. She had more headaches now. Then she felt something dripping from her nose. They found out it wasn't mucus, it was spinal fluid. I want you to get the top part of your neck MRI from a very good neuro. pls. do this. they did with me when I had some of your symtoms after yrs of doc searching because of weakness. I've got a disc that is pressed into my spinal canal, How I've not a clue. Except for past days of prof. dancing, and I used to surf. Well my dh and I are convinced that it is the lack of spinal fluid I am getting in my brain that is also that and that the disc. is cutting off some nerves... This is what I think may have happened w/you. I think during the accident, you snapped your neck and you've got a severe neck injury in spinal disc area. The feeling of something dripping in your head is what I think that is, spinal fluid. That you've lost alot of it... Maybe the discs. moved up and into the spinal area pressing up on it causing a leak that way maybe even a splinter or hole. Either way, this is serious. I don't think you should freak out. But be strong, be strong and firmly ask to see different Neuro. for the upper neck into the head MRI. Around the 3C to 7C discs. Pls. look at the actual MRI in that area itself. He may refer you to a surgeon. Could you let me know what happens???? Or what do you think of what I'm trying to say, doesn't it seem possible that it may be that this is the source of all problems. Why don't you look up spinal fluid in healthboards, I'm going to look it up an see if there is anything remotely related if so, I'll get back to you.

 
Old 08-29-2007, 12:05 PM   #11
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Re: Undiagnosed! What could this possibly be?

I'm sorry you're going through so much pain.
I was thinking about Epilepsy before you'd even said that the neurologist thought you had it. I have Epilepsy, and I also read the epilepsy board here a lot, and a lot of your symptoms sound like they could be seizure-related, or at least neurological-related. Epilepsy has also been mis-diagnosed as panic attacks. Try seeing another neurologist locally. An MRI can come back normal if you have Epilepsy, unless you have a tumor or something like that. You should get an EEG done, but for some people with Epilepsy, an EEG even comes out normal.

Also, the second thing I thought of was Lyme's Disease, which another member also replied about.
Good luck and keep us updated!

Last edited by SentenceDoing; 08-29-2007 at 12:11 PM.

 
Old 09-13-2007, 08:17 PM   #12
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Re: Undiagnosed! What could this possibly be?

Oh my gosh!!!!! I started crying when I read your story!!!! I have the same exact symptoms!!!!! I'm a 40 year old Mom of two and I have never had a migraine in my life, just the occasional headache. In April of 2007 I had an accident where my head and neck went flying around. And May of 2007 I had a top back molar break in half right down to the nerve. A dentist put a filling on it. For the next 3 weeks that tooth throbbed and ached and the dentist kept taking x-rays telling me nothing was wrong with it. She sent me to an Endodontist and he said I'm just swollen from the dental work and put me on steroids for 3 weeks and gave me pain killers!!
June of 2007 I felt an ice picking in the center of the back of my head that went on and off for one day. Totally took me by surprise, I didn't know what it could be.
So, from June to August I would get the ice picking headache only about once a week, and tingling in my finger tips and feet, dizziness, blurred vision, the feeling of an egg being cracked on the top of my head and dripping down and tingling, the bridge on my nose is very full of pressure hard to wear my sunglasses, my legs and feet swell up on and off, and there were several times I felt like this balloon was rushing up from from feet to my head and the feeling of an elephant sitting on my chest, my scalp was tender to the touch, I could hardly wash my hair because every strand felt like pins and needles digging into my head, and during this time my tooth was still killing me!!!!!!
August 16, 2007, the ice pick headache came with a vengeance and I was driving home and had to pull over and got out of the car and my legs couldn't move. I dropped to the ground and couldn't figure out where I was and how I got there. I got my cell phone and called the last call on my phone, which was my husband, and crying and freaking out I told him what was going on and he took me to the ER. They took a CT scan without dye and told me I had a tension headache and gave me pain killers and muscle relaxers and sent me home.
August 18, 2007, same thing happened again while I was in the car. Tingling and the feeling of electric shocks going thru my head and ice picking at the back of my head, and my scalp even hurt to touch it, numb legs and fingers, confusion, disoriented, I could think of words in my head, but I couldn't say them out of my mouth! My Dad was calling me on my cell phone and I was crying and trying to figure out where I was and what was happening. He told me to pull over and he came and got me and took me to ER. They took another CT scan with dye. This doctor diagnosed me with Occipital Nerve Neuralgia. Gave me painkillers and muscle relaxers and sent me home.
August 21, 2007 had MRI ordered by top Neurologist in our Metropolitan area. All results came back normal. The neurologist told me it was stress and told me to schedule a massage or something to de-stress. Gave me some muscle relaxers and pain killers and sent me home.
It is now September 13, 2007 and it has been 28 straight days of having this terrible electric shocks, tingling, throbbing feeling in my head. And sometimes I get this terrible pain behind my ear and up the left side of the back of my head, and an awful dull ache behind left eye. I have been to numerous doctors and dentists and they all say, it's stress. And they send me away with more pain killers and muslce relaxers. I could open up my own pharmacy right now!! The pain was so bad, that I was taking 15 Ibuprofen a day. And finally one doctor begged me to stop. I did. But it hurts! So, I take the muscle relaxers now.
Sept 4th, I finally got a root canal done on that bad tooth and the headaches are still fierce!!!! When the Endodontist was pulling out my nerve, he told me it was extremely inflamed and very angry!!!!!! So, it was inflamed for about 3 months!!!!!!!! The tooth still hurts and I still have the headache, so I scheduled to get the tooth pulled next Friday!!! And I will wait for two weeks to see if I feel better. If I don't notice any changes, then my parents are taking me to the Mayo Clinic in Rochester, MN. They have neurologists, dentists and doctors that all work together to diagnose the patient.
Thank you so much for posting your story. I literally feel you pain. I hope you find some answers quickly!! And I will pray for you!!! I am so glad I found this website.

 
Old 09-13-2007, 08:24 PM   #13
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Re: Undiagnosed! What could this possibly be?

I also forgot to mention that I've had this terrible metal taste in my mouth for the last two weeks!!!!!! It's there all day, every day. Hope to hear from someone with any suggestions.

 
Old 09-15-2007, 05:00 PM   #14
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isotoper HB User
Re: Undiagnosed! What could this possibly be?

I am not a doctor, but it almost sounds like a cerebrospinal fluid leak. Nuclear medicine has a test for this. Maybe that'll help diagnose what's going on with you. Best wishes.

 
Old 09-27-2007, 10:52 AM   #15
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Re: Undiagnosed! What could this possibly be?

I had an EEG for 2 hours and it came out normal. The Dr. thinks I have a chemical inbalance.

 
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