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Should I be concerned? [Long] please read:)
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Should I be concerned? [Long] please read:)

Hello All,

Over the past year I have been developing some very annoying symptoms.

Chronic migraines (I've had a problem with headaches my whole life... I never knew they were migraines though)

Ice Pick Headaches - Also have had my whole life...

Extreme tiredness/fatigue - This is new and has been getting worse and worse for the past year.

Sleep disturbances... whether it be complete insomnia, or waking up several times a night... and it's like I wake up in a panic... I never remember my dreams either. - Also new in the last year. Getting worse.

Urinary incontinence - sometimes I can't make it to the toilet before I start dripping... almost always when I first wake up in the morning with a full bladder... It's almost as if, the walk to the toilet and thinking about going to the bathroom releases my bladder or something. - New in the last year. Not getting better or worse.

Sharp head pains in the same spot of my head, almost daily. Feels like an icepick headache, but slightly different. Sometimes I'll have an Ice Pick headache and that sets off this other pain in the very top part of my skull. Not sure if Ice Pick headaches can cause pain up in that part of the brain. My Neurologist said ice pick headaches are usually by the eyes and forehead... which is where i usually get them.

Intermittent numbness/tingling in my right thigh... had this since Halloween 08. It went away after a month or so. Has come back a few times, and then goes. Super slight numbness.

I haven't had any obviously noticable vision problems... but there has been a few strange occurences that I noticed, particularly when driving... Sometimes I'll look up to my rear view mirror, and then back to the road... and it feels like my eyes just twitch and wig out for like a half a second.... It's hardly noticable to be honest.

Just an overall feeling of being unwell...

I have been talking with my doctor for 6 months... He had me do a slew of blood tests... all negative. At one point we both were concerned I had testicular cancer, because I had a bump down there and my symptoms are that of early cancer. Ultrasound showed I had a hydrocele on my testi... nothing more *PHEW*.

Then he decided to send me to a neurologist because it wasn't anything serious with my testicle.

I had to wait about 2 months to see the neurologist. Partly because of the Holidays.

I saw the Neurologist this past Wednesday... I explained all of my symptoms to him, he then started performing a lot of tests on me.

He had me look up, down, left, right... up down left right.... over and over, probably 10 times. What is the purpose of this? Obviously he is watching how my eye movement and making sure it's normal... Is it normal to check that 10 times though?

After checking the eyes... he tested my reflexes... same thing, 7 or 8 times he had to test them.

Had me walk around his office while he watched my walking for a couple minutes.

Then he left the room for about 10 minutes, came back and said "when was the last time you had an eye exam?" I said... "4 months ago" (early october I got new prescription so I had exam and everything). He said, "Ok, let me look into your eyes"... he looked into my right eye for about 20 seconds.... then into my left eye... and this is where I have gotten really scared. He looked into that eye for a good 3-5 minutes with that bright light... Then he backed up and said "I cannot see behind your left eye.... I am sending you to an eye doctor and you need to get an MRI as well"

My MRI is today at 4:15pm pacific... It can't come soon enough.

My question is this... based on my symptoms, and the testing my doctor did to me, and based on his reaction that he could not see behind my left eye... Should I be concerned?

I tried, but he gave me no details... He made it sound as if he wasn't able to see into my left eye, and I needed my eyes dialated and looked at by an eye doctor... His exact words were "We'll have Dr. Shaye dialate your eyes and look into them, okay?" But I have to ask, how was he able to see in my right eye just fine? Then he said "But we'll go ahead and get you an MRI as well just to put it at ease"


I really don't know what to think... I know I am a bit of a worry-wort about things like this... I think what scares me the most, is that I never thought my symptoms were that of brain cancer... My sister was recently diagnosed with Epilepsy and I have a lot of the same symptoms... that is honestly what I thought could be going on... Then to come to the realization that I am pretty sure my neurologist is concerned about a brain tumor... and then to find out that my symptoms are more similar to that of a brain tumor than that of epilepsy...

It just hit me kinda hard is all.

Anyway... thanks for taking the time to read my story. Do you think I am rightfully worrying? Or does it not sound like anything is really messed up? :p
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Avatar_m_tn
Oh and I need to mention one more thing.

I had a brain MRI for my headaches and stuff about 3 or 4 years ago... and it came back negative then...

So, if I do have a tumor, it's new as of 4 years ago.
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657231_tn?1390151580
I am glad you have seen a doctor and an eye doctor - but now you have to wait for the results and possibly get more tests.

The waiting is the worst part, but it sounds like when the dilated the eye, they could see the structure of the eye fine at the eye doc place (which is fairly normal - my pupils are not even either).

The MRI is a good idea and I hope it puts your mind at rest. There could be so many things going on here - so it may take time to determine what is going on - and you have a history of headaches that are pretty severe, so that makes you think of the head, but it can be elsewhere too.

Did you get a copy of any of the tests, and make sure you get a copy of the report - and let us know what happens.
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Avatar_m_tn
Hey Rumpled,

Thanks for the response.

The MRI went well Friday. Took only about 15 minutes and I was given a CD with my images on them for my own viewing.

From what I can tell, there is nothing obviously abnormal about my MRI. No massive GBM that stands out like a sore thumb... doesn't mean nothing is wrong, but it's cautious optimism.

I go for blood tests today to test for everything (again)... This time, including Lyme disease since I live where Tick's carry it, and I woke up with a tick in my neck 8 months ago... but my doctor at the time did not suspect Lyme, but figured it would be safe to rule it out so he wants me to get tested now.

Tomorrow I see the eye doctor @ 2pm. I should probably hear from my Neurologist on my MRI tomorrow as well.
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657231_tn?1390151580
15 minutes... so no contrast.
It is good to get checked for Lyme - a couple of my friends had it - nasty.
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Avatar_m_tn
Is no contrast bad? :(

I look on the MRI and you are right the images say no contrast on all of them.

Does this mean there could be a tumor there that the MRI doesn't catch?
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Avatar_m_tn
I remember when I had an MRI of my brain back in 2006, at the same location of the one I had last Friday... anyway, back in 2006, they were going to use dye for contrast, but then said they did not need it because they had a new machine that allowed them to see clearly without contrast...

I don't know if this seems feasible, but I am pretty sure this place almost never uses contrast. And the machine is pretty new (looks to be the same as the one in 2006), I can find out exactly what it is if that helps.
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657231_tn?1390151580
It means IMHO, some things would not show - they look to contrast for uptake, changes, and all, but for first MRI passes, many docs go for the no contrast as contrast can be hard on the kidneys.

If they have a 3T, they can see better even without it.

You know that after 24-48 hours, you too can get a report from that place usually.
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Avatar_m_tn
Hey rumpled,

Reading my report from 2006, which used the same machine as I was in this time... it says the images were taken by Tesla 0.7 or soemthing along those lines. Does that make sense?

I left the report at my house or I would type exactly what it said word for word.

My eye doctor appointment went well. Optic nerve looks to be in perfect condition, no inflammation or anything.
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Avatar_m_tn
Hey Rumpled,

Google is my friend:)

This is the exact machine.

http://nsimri.com/index.php?option=com_content&view=article&id=59&Itemid=65
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657231_tn?1390151580
Oh... I don't know anything about open MRIs except that I know that they don't see pituitary tumors - they are not strong enough. It is .7. The .7 refers to the strength of the magnet.

An old MRI - closed - is 1.5. A new closed one is 3.0T!

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Avatar_m_tn
Well that is a bit of a bummer! :(

My neurologist seems to think like there may be nothing wrong with me... The MRI came back normal.

It's funny you say that about pituitary tumors... because I feel my symptoms most mimic that of a pituitary tumor.
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657231_tn?1390151580
Then blood tests are your friend... in that case, MRIs come along last.  Get to a doc and test.
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Avatar_m_tn
Hey Rumpled, thanks for all the responses and stuff :)

Okay.... so my blood work came back for Lyme... negative...

2 months ago I had a full blood panel done that my doctor told me would detect things like cancer and anemia, etc... so I know it's nothing like that.

I called my Neurologist back and moved my next appointment up. It was scheduled March 19th... but I had them move it to Feb 25th, the soonest available appointment.

I am going to talk to him about my MRI and the fact that it was an open MRI with no dye. I want him to judge if he thinks I need a full blown closed MRI with contrast... I personally think I should get one just to rule it out. Better to be safe than sorry when it comes to someone with symptoms like my own.

My eye doc did say he did not notice any inflammation with my optic nerve though... so that is a good sign there is nothing growing in my brain.


I have been thinking a lot more about my symptoms... and I have talked with my sister who is epileptic to great lengths about this.

The more I talk with her, the more it sounds like I have what she has.

She never experienced full blown seizures while awake... it always happened in her sleep... This caused a chain reaction with her body, because she was never able to get the right kind of sleep. REM sleep.

She was so weak and tired all the time she had to quit her job, which was when we were really worried about a tumor with her or something major (she had the same neurologist that I currently have... he as well suspected tumor and scared the crap out of her too)

Anyway... after about 6 months of NOT knowing what she had going on... she finally went to a different neurologist and he decided to do a sleep study to see what was happening in her sleep. Sure enough, her brain was 400% more active than normal while sleeping. She was havnig seizures in her sleep! So... he followed it up with an EEG and sure enough, abnormal!

She was diagnosed epilepsy, prescribed medication and has been doing great since.

I feel like this is what's wrong with me... I want it to be, because honestly I need to get better... and if it's epilepsy then atleast there is a light at the end of the tunnel.

I literally feel like I am dying... and I know most of that feeling stems from NEVER sleeping.

I NEVER sleep. When I do sleep, it's not deep... very light sleep that is more like laying there day dreaming... to eventually awake from my alarm and I think to myself "did i ever fall asleep?" every single night.
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657231_tn?1390151580
Sounds like you need a sleep study then! Let us know what happens.
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Avatar_m_tn
Will do... thanks:]

I'm freaking out a little over all of this... hence the spewing of my thoughts into that last post haha.
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765439_tn?1292964014
so 3t is the most powerful mri?  i just searched them and found a place called 3t open mri.
how could they be most powerful if they are opened mris? only closed detect pits./
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765439_tn?1292964014
is 3t dynamic protocols?
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765439_tn?1292964014
and do i need with contraist./r
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765439_tn?1292964014
rumpled where in nj can i get the best mris done? icant find anything with closed dynamic protocols 3t mris
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Avatar_m_tn
Hey testdeprived...

I do not know the NJ area at all so I wouldn't know... but I do know that there are not an infinite number of these closed MRI's using a 3T magnet in the USA... There are only a handful of radiology imaging centers that have it.

You may need to go out of state... your family doctor should be able to help you find the nearest facility with the MRI you are looking for.

Now... if you don't have a GP (family doc), then it could be hard to find... and I wouldn't know where to look either.
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765439_tn?1292964014
well im guessing ny would have it. there pretty popular hahaha.
im willing to go there!
but yeah scottie, you should get a better mri for sure. an opened mri with no contrast is not gonna show anything! you can barely see mine in a closed mri with contrast. but mine was super small.

im still not sure the diff between a tumor and a lesion.
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