[medicalmystery7]

For the past about 9 years of my life, I have been experiencing progressively worsening neurological symptoms in addition to some other issues like heart palpitations, frequent urination, and a constantly rapid pulse. Some of my neurological symptoms include 24/7 localized pain on this one spot on the back of my head, balance issues (I can't stand still because I begin to stumble, so I have to fidget around), difficulty remembering words, typing the wrong word (in my school papers, I would mean to type "minute" and wind up typing "clinic." stuff like that), difficulty processing new information (it's hard for me to watch films or read books because I forget what happened earlier in the plot and which character is which, etc), very poor concentration, poor short-term memory, smelling burning smells that no one else can smell (haven't had this in a couple of years, though), biting my tongue and/or clenching my jaw when about to fall asleep, and tremors in my hands and tongue, and sensitivity to fluorescent and flashing lights.

The one other symptom that I have mostly kept to myself because it's embarrassing and because I don't want to be stigmatized as crazy is that when I'm really tired or about to fall asleep, I sometimes have these hallucination-like experiences or something. I don't know of a better term to describe them, but they're not hallucinations in the sense that I see animals walking around my room that aren't there or anything like that. Rather, I just kind of start imagining people saying the most random of things. I don't think the people are really there or anything like that. It's very similar to when you're playing out a conversation you had earlier in your head except it's not conversations I've had in the past, and I can't control it. Hard to explain, sorry. This happens either when I'm beyond exhausted but forcing myself to stay awake for whatever reason or when I'm laying in bed with my eyes closed just about to fall asleep. I used to pray before I went to sleep, but I stopped doing it because this would happen and make it impossible to do so.

Sometimes I also will have dream-like experiences where I'll fall asleep, have a really vivid dream for a couple of minutes, and then suddenly jolt awake...I know these aren't actually dreams, though, because they occur within a few minutes of falling asleep, and it is my understanding that actual dreams don't occur until you've been asleep for a while. I know they occur within a few minutes of falling asleep because there have been times where I looked at the time on my computer, saw that it was, say, 10:30 p.m., fell asleep and had a vivid dream about whatever, and then jolted awake and saw that it was only 10:37 pm or so. Sometimes I also jolt awake in the middle of the night with this weird panicky feeling that's difficult to describe...I've noticed that, when this happens, my pupils do not respond to light...it subsides after about a minute or two.

I've read that this can all be related to a seizure disorder, but my neurologist hasn't ordered a sleep study or anything like that to test for seizure activity because he doesn't think there's anything wrong with me. I was going to just tell him that if he didn't test me for seizures, I was going to see someone else, but then my dad informed me that the testing is expensive even after insurance, and I probably can't afford it on my own. He won't help me pay for it because he doesn't think there's anything wrong with me either. Even if he would, though, I'm almost afraid of having the testing done because if it came back negative, then that would give him and my doctors even more reason to accuse me of just being a hypochondriac.

I've been to two GPs, an internist, a neurologist, a cardiologist, a psychologist, and an acupuncturist, and no one with the exception of the acupuncturist will even really listen to me. They all just assume that I'm too young at 23 to have all of the issues I report. The neurologist did test for a brain tumor, but once he looked at my scan and didn't see one, he was just kind of like, "Welp, guess you're healthy then." He said he saw volume shrinkage on the scan but just shrugged it off as insignificant. My train of thought is that my brain didn't just shrink on its own...something is going on that's causing that, and it would explain why I feel so cognitively deficient these days...but he doesn't seem to think there's any reason to look into it further. He did ask if I had a history of drug or alcohol abuse because that's usually what causes that in people, but I have neither; I've never even been drunk a day in my life.

Anyone have any input on what can be going on? I'm really scared, and no one will listen to me. Thank you

Hi, I just read your post, none of this seems to be giving you anxiety, is it? Do you have panic/ anxiety attacks at all? You've been given a lot of help already and seen more professionals than most people with neuro issues. Your brain scan was clean, but one doctor thinks you may have volume shrinkage, which might just be his take on the scan, but since you have no condition or history of drug/ alcohol abuse, your brain probably has not shrunk, ever.

Have you suffered from any head trauma or concussions in your life, do you play any sport? Have you had any surgeries/ is your overall health good? and what about your dental health?

If you have no head trauma and you are otherwise healthy to your knowledge, you seem to have a generalised anxiety disorder. Never underestimate the power of anxiety, it causes havoc and often it comes with cognitive troubles, like the ones you have mentioned. The vivid dreaming is an occurrence that results from over-tiredness, stress, anxiety, over-thinking and sometimes insomnia. These things often causes you to awaken in the night in a panic, and jolting awake after only a small amount of time sleeping, and in my experience, pupils rarely respond well to light when in panic.

Other than that, all I have to say is you are having neurological symptoms that are obviously bothering you, but your doctors think they don't add up to a diagnosis and they very well might be correct about that. If you have had any head trauma (AT ALL) you might have your answer. I don't think you are experiencing any form of seizure activity, usually people suffer from the same type of seizure all the time, and nothing you described sounds like you are having seizures.

But maybe another person on the forum with more experience with seizures might beg to differ.

- Yours

[Darlene]

medicalmystery7,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Sorry to hear what you are going through at this time. Then you to go on with these signs check with an Epileptologist (Dr. specializing in epilepsy) at an Epilepsy Center which are usually at University or big hospitals. I was lucky to go to one, there it didn't cost as much, because of the credit of the medicine because it was a school of medicine.

Your need to cut out the carbs and starch foods because they will trigger seizures. Start keeping track of your seizures by writing them down on a calendar, by doing this the Dr. may see a pattern in your seizures. Get yourself on vitamin B12 500 mcg. once a day. Also avoid very bright light, like at a theater, the flashing can bring on a seizure. Just close you eyes and turn your head at that time.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

[medicalmystery7]

Originally Posted by Darlene

[CENTER]
medicalmystery7,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Sorry to hear what you are going through at this time. Then you to go on with these signs check with an Epileptologist (Dr. specializing in epilepsy) at an Epilepsy Center which are usually at University or big hospitals. I was lucky to go to one, there it didn't cost as much, because of the credit of the medicine because it was a school of medicine.

Your need to cut out the carbs and starch foods because they will trigger seizures. Start keeping track of your seizures by writing them down on a calendar, by doing this the Dr. may see a pattern in your seizures. Get yourself on vitamin B12 500 mcg. once a day. Also avoid very bright light, like at a theater, the flashing can bring on a seizure. Just close you eyes and turn your head at that time.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Thank you for your suggestions. I recently had someone else suggest I go to a school of medicine as well, so perhaps I should give that a shot. I'm just so sick of throwing away money on doctor after doctor and traveling all over the place just to be told that there isn't anything wrong with me. It's very wearing.

I did try cutting out carbs twice, and both times I did feel a lot better. However, about two weeks in, I also almost passed out both times and had to discontinue the diet. That was when I was a vegetarian, though, so my low-carb options were very limited. Perhaps the diet would work out better for me this time around.

[Mark in Idaho]

MMystery,

Darlene makes a good point about the B-12. In fact, you should probably take 1000 mcgs and a B-50 complex and magnesium and calcium supplements, too.

You did not answer luduplo's question about any kind of brain or head trauma. Do you or did you play any sports? Have you been involved in a vehicle collision? Have you suffered a high fever?

Before a sleep study, an EEG with sleep session would be a better study. You stay up all night before the EEG so you can easily fall asleep during the EEG. Much less expensive that a full sleep study.

Are you taking any medications? Please disregard your pupil reactivity observation. It is very unreliable for a person to check their own pupils for reactivity.

You sound like you have had brain trauma, likely a long term series of very mild but repeated brain trauma. Your cognitive and memory functions are very common to Post Concussion Syndrome and/or Sub-Concussive Impact Syndrome.

I usually post in the Traumatic Brain Injury and Post Concussion Syndrome forum. I have lots of knowledge and experience in that area. I have suffered a few different seizure symptoms.

My best to you.

[medicalmystery7]

Originally Posted by Mark in Idaho

MMystery,

Darlene makes a good point about the B-12. In fact, you should probably take 1000 mcgs and a B-50 complex and magnesium and calcium supplements, too.

You did not answer luduplo's question about any kind of brain or head trauma. Do you or did you play any sports? Have you been involved in a vehicle collision? Have you suffered a high fever?

Before a sleep study, an EEG with sleep session would be a better study. You stay up all night before the EEG so you can easily fall asleep during the EEG. Much less expensive that a full sleep study.

Are you taking any medications? Please disregard your pupil reactivity observation. It is very unreliable for a person to check their own pupils for reactivity.

You sound like you have had brain trauma, likely a long term series of very mild but repeated brain trauma. Your cognitive and memory functions are very common to Post Concussion Syndrome and/or Sub-Concussive Impact Syndrome.

I usually post in the Traumatic Brain Injury and Post Concussion Syndrome forum. I have lots of knowledge and experience in that area. I have suffered a few different seizure symptoms.

My best to you.

*edit* luduplo*edit* focused on his/her assessment that my issue is an anxiety disorder *edit* it's something that I strongly do not believe to be my main issue, and I feel very dismissed when I try to seek help and people tell me it's all in my head.

Anyway, my B12 levels actually were low when my neurologist ran blood work. He suspected that I had pernicious anemia, but after taking supplements for a month, my level was normal. I have been taking a B-complex supplement for several months now, and I have not noticed any improvements in my symptomatology.

Regarding brain trauma, I did hit my head really hard on a lamp table about 4 years ago, so it is possible that that incident contributed to my issues. However, I began experiencing symptoms several years before hitting my head. I did not partake in sports while I was in school, but I was involved with color guard with my school's marching band for two years. I was never hit in the head with a flagpole or anything like that during this time, however.

Up until a few days ago, I was not taking any medications. I have been taking a Chinese herbal formula that my acupuncturist gave me for the past about two months. A few days ago, I began taking Prilosec because my cardiologist wants me to try it and see if it clears up the nagging chest pain that I have. As I said, though, I've literally been on the Prilosec for a few days, not even a full week.

[mrsD]

Welcome to NeuroTalk:

I'd like to expand on the B12 treatment and test results with you.
I strongly suggest you get the numbers of both your tests.
In the US, lab ranges are outdated, and "normal" is not really normal anymore. You should be at 400 US units or above to be considered low normal now.

The amount of B12 in a Bcomplex is very small. Many people cannot methylate (activate) the B12 in most vitamins which is cyanocobalamin. There are now inexpensive methylcobalamin tablets you can take. I'd recommend 5mg daily on an empty stomach, for 3 months. And then get retested. You should be at about 1000 for your serum reading by then.
Here is the medical site for doctors to explain the new (since 2003) treatment protocols:
http://www.aafp.org/afp/2003/0301/p979.html
If you were taking the supplements when you had your 2nd testing, that reading is not accurate and does not reflect what your status is without supplements.

There are people who follow the vegetarian diet and become low in B12. Also if you inherited the DNA error (present in about 10-30% of people) in activating B12 so it will work in the brain, and body properly, you cannot convert cyano in vitamins for yourself.

Methylcobalamin, the active form, is the cofactor for proper maintenance of sleep. It is necessary to convert serotonin to melatonin which is the sleep promoting hormone in your brain.
So if you don't have the methyl form in your brain, you will not sleep properly. All sorts of other neurological problems can result with low B12 in the brain.

Here is long and very detailed B12 thread here:
http://neurotalk.psychcentral.com/thread85103.html
It might be very useful for you to learn about this now, since you already tested low once for B12. It might mean you will need proper supplements for life, since you don't know why you were low to begin with.

Taking methylcobalamin daily correctly costs pennies a day. It is easy and the most inexpensive thing and corrects a very common problem in many Americans. You can find it online at iherb.com, Swanson's, Vitacost, or Puritan's Pride.

Originally Posted by medicalmystery7

*edit* luduplo*edit* focused on his/her assessment that my issue is an anxiety disorder *edit* it's something that I strongly do not believe to be my main issue, and I feel very dismissed when I try to seek help and people tell me it's all in my head.

Anyway, my B12 levels actually were low when my neurologist ran blood work. He suspected that I had pernicious anemia, but after taking supplements for a month, my level was normal. I have been taking a B-complex supplement for several months now, and I have not noticed any improvements in my symptomatology.

Regarding brain trauma, I did hit my head really hard on a lamp table about 4 years ago, so it is possible that that incident contributed to my issues. However, I began experiencing symptoms several years before hitting my head. I did not partake in sports while I was in school, but I was involved with color guard with my school's marching band for two years. I was never hit in the head with a flagpole or anything like that during this time, however.

Up until a few days ago, I was not taking any medications. I have been taking a Chinese herbal formula that my acupuncturist gave me for the past about two months. A few days ago, I began taking Prilosec because my cardiologist wants me to try it and see if it clears up the nagging chest pain that I have. As I said, though, I've literally been on the Prilosec for a few days, not even a full week.

[medicalmystery7]

Originally Posted by mrsD

Welcome to NeuroTalk:

I'd like to expand on the B12 treatment and test results with you.
I strongly suggest you get the numbers of both your tests.
In the US, lab ranges are outdated, and "normal" is not really normal anymore. You should be at 400 US units or above to be considered low normal now.

The amount of B12 in a Bcomplex is very small. Many people cannot methylate (activate) the B12 in most vitamins which is cyanocobalamin. There are now inexpensive methylcobalamin tablets you can take. I'd recommend 5mg daily on an empty stomach, for 3 months. And then get retested. You should be at about 1000 for your serum reading by then.
Here is the medical site for doctors to explain the new (since 2003) treatment protocols:

If you were taking the supplements when you had your 2nd testing, that reading is not accurate and does not reflect what your status is without supplements.

There are people who follow the vegetarian diet and become low in B12. Also if you inherited the DNA error (present in about 10-30% of people) in activating B12 so it will work in the brain, and body properly, you cannot convert cyano in vitamins for yourself.

Methylcobalamin, the active form, is the cofactor for proper maintenance of sleep. It is necessary to convert serotonin to melatonin which is the sleep promoting hormone in your brain.
So if you don't have the methyl form in your brain, you will not sleep properly. All sorts of other neurological problems can result with low B12 in the brain.

Here is long and very detailed B12 thread here:

It might be very useful for you to learn about this now, since you already tested low once for B12. It might mean you will need proper supplements for life, since you don't know why you were low to begin with.

Taking methylcobalamin daily correctly costs pennies a day. It is easy and the most inexpensive thing and corrects a very common problem in many Americans. You can find it online at iherb.com, Swanson's, Vitacost, or Puritan's Pride.

Hi, thank you for your input.

Here's how the B12 situation played out:
When I went to my neurologist, he had no lab work on file for me, so he ordered basic labs. The next time I saw him, he went through my lab work and said that everything looked normal with the exception of my B12 level, which was rather low for my age. I mentioned to him that I had noticed at least an increase in energy when taking B12 supplements in the past, and he said that maybe supplements would help me, but usually when you see numbers that low at my age, it is because your stomach is incapable of absorbing B12,and you basically just have to be on B12 shots for the rest of your life. He told me to try taking B12 supplements for a month, and then we would test my levels again; if the number didn't budge, then we'd have to start on B12 shots, but if it did, then it's likely that pernicious anemia wasn't my main issue. I asked if the B-complex vitamins I already had at home would suffice or if I needed to specifically buy B12 supplements, and he said the complex would be fine. I also asked him if my former vegetarian diet could have been the reason my B12 level was so low, and he said not when you see a number that low.

A month later (technically it was closer to 3 weeks later because I wound up having to go into the office sooner because my left leg randomly went numb one day), he had the lab draw my blood again to recheck my level. He said he would call me in a few days and let me know the results, which he never did...I would up having to call the office numerous times over the course of the next three weeks before finally getting in touch with them to find out the results. *insert eyeroll*

Shortly after having my blood drawn the second time, I began seeing an acupuncturist. I told him about the low B12 level, and he suggested that I take B12 in Methylcobalamin form, so I went to the local vitamin shop and purchased a bottle of sublingual Methylcobalamin tablets. I took these for a couple of weeks but then accidentally spilled the bottle. I was going to replace it when I finally got in touch with my neuro office and was informed that my level was normal this time around, so I figured that my complex tablets were sufficient if my level rose into the normal range when I was just taking those.

I suppose it wouldn't hurt to purchase another bottle of the Methylcobalamin. I doubt it's going to be the answer to all of my issues, but it would be pretty neat if it were.

[mrsD]

You need to get the results of your B12 tests in numbers.... "normal" is not sufficient. Lab ranges in US report levels of 200 as "normal" and that is now known to be too too low. Even the cut off of 400 is low for anyone with neuro symptoms. Read my thread that I linked for you. Then you will understand, more clearly.

Most doctors do not understand or treat low B12 according to the new information available now about it.

But that is YOUR decision. It is a basic fundamental supplement for your nervous system. And in the end you will be responsible for maintaining it for the rest of your life.

When you get the methylcobalamin replaced make sure you take it on an empty stomach. Most is dissolved in your saliva and you swallow that. It will be absorbed then passively (without instrinsic factor from the stomach being needed) in the small intestine. But if there is food and fiber present, then the micrograms which are very tiny are absorbed into the food and move along past the absorption site and are then lost. So EMPTY STOMACH assures oral absorption. Very little is absorbed under the tongue, in reality.

[medicalmystery7]

Originally Posted by mrsD

You need to get the results of your B12 tests in numbers.... "normal" is not sufficient. Lab ranges in US report levels of 200 as "normal" and that is now known to be too too low. Even the cut off of 400 is low for anyone with neuro symptoms. Read my thread that I linked for you. Then you will understand, more clearly.

Most doctors do not understand or treat low B12 according to the new information available now about it.

But that is YOUR decision. It is a basic fundamental supplement for your nervous system. And in the end you will be responsible for maintaining it for the rest of your life.

When you get the methylcobalamin replaced make sure you take it on an empty stomach. Most is dissolved in your saliva and you swallow that. It will be absorbed then passively (without instrinsic factor from the stomach being needed) in the small intestine. But if there is food and fiber present, then the micrograms which are very tiny are absorbed into the food and move along past the absorption site and are then lost. So EMPTY STOMACH assures oral absorption. Very little is absorbed under the tongue, in reality.

I have wanted to look at my lab work for a while, and I was planning on requesting a copy of all of my numbers at my next visit. Getting ahold of those may be difficult now, though, because I actually just cancelled the upcoming appointment I had with my neurologist and asked my GP for a referral to another one because I don't feel like the current neuro listens to or takes me seriously. So it may be kind of awkward to walk in there and be all, "Hi, it's me. The woman who no longer wants to see you and is seeking a second opinion. Can I have a copy of the lab work you did on me?" But I guess I am entitled to see my own numbers regardless. I have a cardiologist appointment at the same medical center next week, so I'll call in ahead of time and ask my neuro's assistant if she can print off a copy of my lab work to pick up while I'm there. Then I'll let you all know what my numbers were.

I've actually been taking my B-complex on a full stomach because my multivitamin makes me very nauseous if I take it on an empty stomach, so I figured there was a chance the same would be true with the B vitamins. Thanks for letting me know that I should actually be taking it on an empty stomach.