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Avatar universal

Is it possible to have a brain tumor that a CT scan doesn't pick up?

I've been progressively developing neurological symptoms over the course of the past ~nine years. There's a spot on the back, right side of my head (about two inches behind my right ear) that hurts excrutiatingly bad pretty much 24/7 (it does let up occasionally, though) and has for the past five years. Other issues that I have include feeling like I can't balance all of the time (I have to fidget around because if I stand still for more than a few seconds, I feel like I'm going to stumble), difficulty recalling words, writing the wrong word when writing something (like, I'll mean to type "minute" and wind up typing "clinic." Weird stuff like that), smelling a burning smell that no one else can smell, involuntarily biting my tongue when I'm drifting off to sleep, hallucination-like episodes when either really tired or about to fall asleep, vivid dreams that I don't think really are dreams because they occur within like 2 minutes of falling asleep (I've fallen asleep at 10 pm, had a really frightening vivid dream, and then woken up to see that it was only 10:08 pm), really poor concentration, a sensation of liquid in my head, episodes where my skin goes numb all over (more of a rubbery feeling than a complete lack of sensation), times when a random part of my body will go numb, and trouble processing new information. It's very difficult for me to read books or watch films because I forget which character is which and what has happened so far in the plot line. I just feel very cognitively deficient all of the time, and I wasn't always like this. I used to be so sharp, and now I find myself forgetting what I was doing in the middle of things.

My neurologist didn't detect any tumors or lesions on my CT scan, so he's basically concluded that I'm just making it all up because he thinks I'm too young (23) to have as many issues as I claim. He did say that he saw volume shrinkage on my scan and asked if I have a history of heavy drug or alcohol use. I told him that I have neither (I've never been drunk a day in my life even and have had maybe a total of 5 glasses of wine in my life), and he just said "Well that's okay, though. Some people just have that," and that was that. Personally, I think that, if I have brain atrophy, something has to be causing that and it didn't just happen on its own, but he doesn't seem to think it's anything to be alarmed about. He also completely shrugged off my concern that some of my issues may be related to a seizure disorder. I've also been to two GPs, an internist, a psychologist, a cardiologist, and an acupuncturist; with the exception of the acupuncturist who gave me herbs to try, they've all just kind of nodded their heads at me and then sent me home. It's remarkably similar to talking to a brick wall.

I'm so frustrated and don't know what there's left for me to do. I'm not convinced that there isn't something going on in my brain, but apparently trying to convince doctors of that is like trying to convince Rush Limbaugh to vote Democrat.
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171768 tn?1324230099
Sorry you took my comment as though I am siding with the doctor.

Here is my experience-
With neurological symptoms, there are literally thousands of possible causes. To list symptoms without diagnostic imagining to back it is not useful to doctors. I have been in your shoes. I do sympathize. But until I had that MRI with and without contrast, there was no diagnosis and nothing else the doctors could do for me. They speculated MS. They speculated brain tumor. They speculated that it could be nothing. All of those options and thousands more were possible. I performed well on those basic neuro function tests that you received so I was sent on my way with the script for the MRI w/o contrast. I chose to not follow up for a year and a half. That was my fault, not theirs.

I think a new neurologist can be good to have a fresh start. But I honestly wouldn't expect a different outcome because what you describe is what I have experienced, and not just with a neurologist, but plenty of other specialists. As Rumpled said, it is unfortunately how the system works. I am sure that in your readings and discussions on forums, you have seen that so many people are dismissed as hypochondriacs and not even offered the MRI. I'm not telling you to allow the doctor to dismiss your concern. I am just saying that if you do not take the diagnostic tool they offer, they will dismiss you.

I can't tell you how many times I have had to take my healthcare in to my own hands and advocate for myself. My story is actually alarming.  My quality of life was deteriorating and in the end I was the one who found the right doctors and therapies on my own. My case is NOT typical so most specialists who work with my tumor and problems did not recognize what was wrong. But along the way, to get to this point. I had to play the game. I had to do the standard tests to rule everything out. I have wasted a lot of time and money to rule them out. But it was worth it in the end because it got me closer to answers. By the way, I also had to go the psych route to rule anxiety out as well. Now if it is suggested, I am armed to say that no, it is not anxiety. Any anxiety I do have is from not having doctors understand my problem!
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Avatar universal
You probably passed the basic testing. CTs can show some things but MRIs can show other things - so an MRI with and without contrast would be ordered if the doc is worried. That contrast is different.

They have to freak you out - the real odds of issues are pretty low (and I tend to get a lot of side effects!) and it makes a real difference in the quality of scans. Just make sure you drink after to flush the system.
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171768 tn?1324230099
i would suggest a second opinion from another neurologist. Your symptoms do sound neurological but the possible causes are countless, ranging from benign to serious. So, it's not really worth speculating about what it can be. Was the CT with and without contrast? I wonder if an MRI with/without contrast would be helpful in ruling out certain conditions. How do you perform on the basic neurological functioning tests that they administer? Have they tried an EEG to rule out seizures?
To answer your original question, I know that for the type of tumors I have, MRI is more efficient in detection. However, without contrast, mine were completely missed. I do think that most tumors would be seen.
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Avatar universal
phone is messing up on this site trying to type. Many doctors Have not been trained to consider mold toxicity
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Avatar universal
Wow, I received an email saying I had a new reply on this post I made many years ago. I am now almost 30, still have no answers, and my symptoms have worsened a lot. I read these posts I made 6 years ago and am just amazed at how good I still was at words. I have so many more cognitive issues now. I barely talk because most of the time I cannot put together the words to say what I want to say. I don't have money to go to more doctors. I went to a doctor a while back that I couldn't afford to see. Now I have bills from that I cannot pay. All he did was tell me to take magnesium. I took magnesium for a month, and I still have every symptom. I can't afford to go back, and I know he would not listen to me anyway. I still live with a parent who hates me because I cannot keep a job because my memory is very bad. I just lay in bed and cry mostly. This has been going on for so long. I am so miserable.I don't want to exist anymore. Existing is torture.
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4 Comments
The only reason I do not want to go to sleep and never wake up is my dog would be sad. But she is old, so I am not sure what purpose I will have left once she dies.
I suffered from Mold  toxicity which in return gave me a number of medical conditions. One was granulomatous disease which causes benign tumors all over my body mostly in the lungs. Mold is one of the major players in causing cancer and numerous other medical problems. Please watch Moldy the .movie on YouTube. Also you  definitely need to switch to organic  foods and try to detox he will be amazed at the difference.    Please take this serious it is a serious condition a lot of positions haven’t been trained in mold toxicity  diseases
i need to be able to afford to go to mayo clinic or something, not to spend more years trying to figure this crap out myself and investigating every little condition the internet says i might have. it's pointless. the internet says i have mold toxicity, lime disease, adrenal fatigue, gluten intolerance, thyroid problems, and the list goes on indefinitely. i do not have the energy for that kind of thing anymore.
Can i just ask you what state do you live in? Florida is a tough place to live! I know you feel like you cant go on but look, your future can be incredible so dont give up! I was in an RV that was just riddled with mold and it made me and my dog so sick in unbelievable ways, mold rage and depression just to name a few. I cant go into a lot of places and i live outside in a tent now. I don’t know if I will have to live like this much longer but i will if i have too, because im not letting some little micro organism beat me out of my life! Something tells me that if you’ve been fighting it this long than your very important to this planet. Your not alone in this fight to be healthy between air toxins and GMOs in our foods it’s really hard to feel good anymore but not impossible! You have what it takes to cure yourself! Doctors are not always the best choice and believe me I have a lot of experience with doctors! Ask yourself this, have i been in the same surroundings from the time i started being sick? What foods could i be eating that I could have a allergy to? Whats in the water i drink? If your a soda drinker or eating a lot of surgar STOP! Your mind will play tricks on you so analyze everything! I say all this with love and understanding but you are your best doctor! Please dont give up, your important!
Avatar universal
Check for mold toxins around your house
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Avatar universal
I'm not sure if you found an answer but if not, have your neurologist do a spinal tap looking for antibodies. This sounds just like autoimmune encephalopathy.

Not many neurologists know about it. They used to think it was very rare, but they believe people are misdiagnosed far too often. There is a lot of teasearch coming out of Mayo Clinic. Left untreated it can progress to seizures, coma and death. Sometimes very quickly.

Many who answered might need to be tested as well.

How I know-I was diagnosed in March 2016.
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Avatar universal
I had a pain on the right side of my head for about 5 month. My GP requested a CT scan, and it came back with a high density on the same side of the head that I was feeling pain. I don't know what "high density" on CT scan means, but GP requested a MRI for me. I had a MRI one month after the CT scan and it came back normal.
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Avatar universal
Well I have some very concerning symtoms..and I had a CT scan ..my doctor has ordered a MRI of not 9nly my head but neck ..He feels it will be more conclusive than CT
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Avatar universal
Your story does give me hope as well as her i am sure. I just had my brain tumor removed in september but all of the symptoms and more are beginnig to pop up again. My doctors dont believe me believe because my MRI and CT came back normal. However , i think they forget how fast mine grew but that is besides the point. At least I know I am not going crazy
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Avatar universal
hey I am only 19 yrs. old  and I had an acoustic neuroma (abrain tumor that only older people get)  removed this past September but the only reason why they caught was because they decided to do my MRI with contrast ( when they didn't use the contrast nothing showed up). As for what you are going through, I am actually going through something similar to that. I am having changes in my vision, forgetfulness, my mouth and brain do not correlate, i try to write one thing and something else comes out, balance problems, fast onset headaches, etc. and my doctors are saying the same thing because my MRI or CTs have not shown anything so they believe i am perfectly fine and i am making it up.I know Im not because I have no reason to. I too have never been drunk in my life or even been around drugs. So You are not going crazy! There's probably more people out there that are going through this too. If i figure anything out ill let you know
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7698266 tn?1393437230
I felt like I should also say that not ALL doctors are terrible. I just read over my posts & there's a lot of doctor bashing in there! I feel bad because I did FINALLY find wonderful KIND, & CARING doctors. They ARE out there so hang in there! :)
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7698266 tn?1393437230
It's SO easy to mess up the letters. At least you don't mess up the words!! We were going down the river & there was a Mama turtle & her babies sitting on a log & I said, "Awww look at those cute squirrels!! LOL!! I will NEVER live that one down!! My daughter's my translator!! :) I just laugh at myself & try to stay positive. As far as the sleep study, it is hard trying to sleep in a different environment & with all of that stuff stuck on your head. I didn't sleep long enough for mine to even get accurate results so of course it came back as, "Nothing abnormal". My Mom & I just started laughing. I come from a family of VERY ACTIVE sleepers! At some point several of us have actually left the house! My daughter did once. Thankfully, each time one of us has done this while someone else was awake & was able to catch us in the yard! My daughter was "Going to school" so she thought, at 11pm!! Point being, just because everyone is finding "Nothing abnormal" in the studies doesn't mean nothing is wrong, Don't give up. Remind the doctor to treat you & not your files. Bodies change, things get missed & YOU know YOUR body better than anyone. Unless he or she is psychic! If that's the case ask if they are (psychic), sit back & let them do their magic! Which would be awesome, right?! I've actually asked one of my docs before something like that. I've also reminded them to treat..." ME,HELLOOO the person sitting in front of YOU!" He actually laughed. It surprised him. LOL! Had to remind one of the Hippocratic Oath. My parents always said I was a "Smartmouth", not in a good way. As in "Shut up or else!" You know there's only so much a woman can take!! This is our Brain!! Not our TOE!! I hope some of this helps & isn't annoying & I hope the best for you.
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Avatar universal
wasn't* able to fall asleep*
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Avatar universal
Yes, you are correct. What I had was an EEG, although I have had EKGs too. I always mess up the letters. :)

The reason why I mentioned that I was able to fall asleep is that some of my symptoms suggest there might be something going on with my sleep, not necessary seizures, but something abnormal. Who knows, though.
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7698266 tn?1393437230
Hi, I'm so sorry that you've been through so much. I can relate. I have been in your shoes & have a VERY STRONG mistrust for doctors now. If it's a new doctor, they have to EARN MY TRUST!! You wouldn't believe some of the nightmare's I have to tell!  I do have  some tips if you don't mind. No offense, I am not trying to be arrogant or anything to you or Rumpled with a couple of possible corrections? If I'm wrong either you please let me know. I just want you to be fully prepared next time you go & Take Charge withe your doctor! :) It sounded like you had a EEG, not a EKG (that's a heart study) your EEG I'm guessing was asleep study cause you said you never feel asleep & they said nothing was abnormal. If they were testing for seizures of course it would be abnormal! Unless you seize in your sleep! You need to be awake, They put flashing lights, spinning wheels, all kinds of things in front of you to trigger a seizure. Not painful, just kind of weird. Oh, you'll only need a EGD if you're having stomach problems. It's not painful either, they sedate you & run a small scope through your mouth, esophagus & stomach to make sure everything looks ok. They even take pics for for you to take home....seriously they do!! LOL! Not in my photo album!! I hope some of this helps.
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Avatar universal
I have in the past. :) I'm not trying to make anyone feel like they have to provide me with suggestions. I just got an email saying there were new posts to this thread, so I came and provided an update.
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Avatar universal
I don't have any suggestions - did you post in neurology?
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Avatar universal
Yes, I had an EKG. I wasn't able to fall asleep during it, so they weren't able to see if anything abnormal went on in my sleep. They said nothing abnormal showed up, though.
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Avatar universal
Did you ever have an EGD (brain wave test)?

It can be frustrating to be a medical mystery...
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Avatar universal
Hi all,

I didn't realize this thread was still receiving responses 2 years later!

Since I posted this thread, I have had two more MRIs, both with contrast, and been to three more neurologists, in addition to a long string of other specialists and generalists. Nobody has figured anything out; nobody really seems interested in digging past an MRI to figure out what's causing my symptoms, so I've basically given up. I don't have the money to blow on anymore useless, 5-minute-long doctor's appointments. It s.ucks, though, knowing I need help but having zero idea how to get anyone to try to help me.

I tried going back to school because I was tired of not doing what I want to do because of my mystery symptoms, and it's not going well because of the cognitive problems. It's really unlike me to struggle academically given that my undergraduate GPA was a 3.95, but of course, this still will not be enough to get doctors to consider that I really am experiencing cognitive problems. I wound up in the school psychologist's office bawling after an incident in chemistry lab where everyone else seemed to catch onto the topics instantly, while I struggled to wrap my brain around the basic math we needed to do to complete the experiment. She referred me to an outside psychologist since the school's counseling center can't see part-time students. I have an appointment on Tuesday. I'm going, even though this guy is outside of my insurance network and I'll most likely wind up paying a ton of money for nothing again, because I just don't know what else to do. I try to just ignore all of the symptoms, but it's really, really hard when they're negatively impacting every single aspect of my life. *shrug*
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Avatar universal
I have found that after a doctor gets past his 5th year of being in practice, he gets desensitized and just seems to lose interest in digging, researching and REALLY discovering what is wrong with you. I ignored a bad gall bladder for 7 months because Doctors treat you like a whiney hypochondriac whenever you go to them. My doctor chewed me out . He said, "You HAD to have known you needed help" !!!  "You could have set up gangrene !" But, I, like you, am afraid to be treated like it's ALL IN MY HEAD. Ive had some of your same symptoms and the doctor referred me to a psychologist. I think its IMPORTANT for you to keep at it until you FIND a Dr that actually CARES and TELL HIM/HER what you want done and what YOU THINK it is. Dont worry about looking like an idiot to them.....they are going to TREAT you that way ANYWAY. Good luck!!!
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Avatar universal
As far as I know, cymbalta and lyrica are also pain medications. But I am not in favor of tossing pills at a pain unless you know the source of the pain as a patient myself.

As for the unspecific - I think she meant non-specific. That your set of symptoms does not point to any one thing so naturally she is just going to treat a symptoms or set of symptoms. Having had that hurdle myself, I can tell you that means there is no way to pinpoint any one disorder from your set of symptoms. It *should* mean that the doctor should work from the most common to the rare to rule things in and out, but it seems she is not going to do much at all.

If your skull is changing shape - just as a lark - get your IGF-1 tested. You may have the beginning of a growth hormone issue? Just guessing.

Do you get copies of all your testing and reports?
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Avatar universal
I just saw a neurologist (a Bulgarian one, educated in the US, but one with a heavy accent), at a well known neurology center in Seattle. I took the first appointment I could get because frankly my symptoms were alarming, facial numbness with some paralysis, growing steadily worse for about 2 years, facial swelling, numbness in eyes, tongue, back of throat, difficulty swallowing, severe pain in the back, top, and sides of the head, eyes, ears, sinuses, somnolence (I can't wake up, no matter how much sleep I get), same mental confusion, dizziness, equilibrium problems, tinnitus, neck pain (cervical disk bulging, and arthritis, cyst on facet joints), pain in right eye gets worse with high altitude and barometric pressure, but CT of sinuses shows no sinusitis. I've seen a neurosurgeon, and told her about my symptoms, she ordered an MRA of my brain and neck and an angiogram, but the insurance company won't pay for it because they say I have Sjogren's syndrome and its a pre-existing condition (what does it matter it's an autoimmune disease?). They are appealing the insurance decision, but it is a slow process full of red tape, and frustration, this is a State run program, which I pay for.

The neurologist fist suggested I take Lyrica, I said FORGET it! That's been shown to lead to brain decline and is linked to sudden death syndrome.  It just masks symptoms, makes you think you don't have pain. When I refused that, she suggested, Cymbalta. What a joke. A medication for depression, that off label may help chronic pain. I went to her to find some answers about why I was experiencing all these symptoms, which would scare anyone. She also suggested I do calisthenics, which is I guess the Russian word for exercise. With a headache, dizziness and blood pressure in the triple digits (I'm not overweight and my cholesterol is perfect). She said my symptoms were unspecific. What, excuse me for swearing, but what the hell does that mean? Unspecific? Too many?  She's confused?  Over her head? I should have done some research and found a good doctor, but who can you trust?  You have all these services that you pay for, but in the end, are they paying to get recommended?  I went to this hospital because this was where my rheumatology work-up was done, and I liked the doctors there. This is my brain we're talking about. I think I will try to go out of network and fly down to California and Stanford next for a second opinion because I feel that so frustrated by this system and these doctors. I just went to my primary care doctor today and she ordered an x-ray of my sinuses because my face was so swollen, I asked for a copy of it, and I looked at the images, and one side of my skull looks a lot different than the other, its bigger on one side than the other, above my eye near my sinus. You'd think a neurologist would be able to see SOMETHING if it was that glaring. Now I'm waiting for them to call me back, its been an hour and a half and I've had to call them back twice already.

So what I'm trying to tell you is just because they have MD by their name doesn't mean that they are Einstein, or better than you or me. It could mean that they got some good test scores because they're a lot stricter in some countries than they are here, and if it means coming to the US and getting a free education and political asylum, to escape a life of drudgery in their homeland, some people will do just about anything.
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