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Undiagnosed Symptoms Community
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611838 tn?1220718729

Can anyone help?

I am 35 years old, and for the past 16 years I have had a very life altering disorder with no actual diagnosis by any medical professional.

All the symtoms started before I had minor head truma 16 years ago, but got much worst after.

They include:
24/7 brain fog, lack of balance and coordination, slurring speach, constant fullness in head, constant visual problems in tracking objects, and looking from something close to me to something far, popping in the ears, very tense musles in my face, neck and back, pressure behind my eyes, throbing pain behind my eys, which all cause anxiety, and add like mental symptoms.  Also ringing in the ears at time, decreased hearing in one ear or both with increased dizzyness, and then it goes back to the normal( well its never really normal)

I had everything, and I mean everything, examined 16 years ago.  At the time no one could find anything other then one eye specialist who said I had tracking problems but that all of my eye functions were fine.

Mris, cts, all found no issues.

At the time I was so "out of it" I couldn't drive a car, watch tv or read a book as keeping focused on anything was immpossible and I had no sense of where i was or what was moving *** everything seemed to move in different directions. i also had and still do, trouble doing any of these, i can't turn my head while driving as i lose my point of reference so i use my peripheal vison to see things, I can't read for more then a minute beefore the words are buned into my vison as an afterimage, I get green sparkles in my vision and word seem to move, float.

I only got better after self prescribing myself klonopin (a valium like medacine) after i took some duting an MRI and my symptoms improved, the doctors at the time thought I was crazy but klonopin 3 times a day has made it possible to function somewhat normally, along with spending the two first years forcing myself to look at the corners of a room and keep the room from appearing to move, as when my eyes move objects seem to move faster then my eyes are.

if I look from one corner of the room to the other, the second corner leaps into place sooner then my mind thinks it should arrive, making everything move quickly in the opposite direction that my eyes move.

Its been getting worse during the past year and each hour/day is different. If I DO NOT take my klonopin for a day everything gets a thousand times worse, and I am actually disabled at that point....

I am hoping that seeing new doctors and advances in medicine will help and am going to an inner ear specialist in Boston next week.

I was thinking and at the time everything started I was in a local band with very loud music for long periods of times, and of course no protection, until it was probably to late, so I have slightly decreased hearing, normally its foggy as it goes in and out slowly but very subtle.

I also have tingiling hands and feet and have had them for a very long time. But the most important thing for me is to stop all the moving, vision, head full, eye pain issues that cloud my thoughts so I can live a more normal life.

I have searched everywhere and seen similar problems from a lot of people, most point towards an inner ear issue, but I can't be sure... as they said they did not find anything, but everything seems very similar to an inner ear problem.

I am scared for two reasons, first, that they may find an inner ear issue, only because it doesn't seem like a lot of those on the internet have had great results in treating the problem. And secondly, that they may again find nothing.

If you can provide me with any help, my family and I would greatly appreciate, and I feel the pain of the hundreds of other who seem to be in similar situation, and would like to stay in touch till both you and I can get rid of these things once and for all, if not at least to greatly reduce them, and at the very least to diagnose them:)

I thank you in advance for your time in reading this....

Also, to make things even more strange, I had a psyche like test 2 years ago where the doctor was amazed at results *** I scored very high at many things that were very complex, but scored horribly in tests were i would look at a row of random letters and then count the number of a's in them or t's in them, i was incredibly slow because of the difficulty with this disorder.

Also I could not do simple math were he would ask me to add 5 to 7 then 8 subtract 4 and so forth and go on and on thru 20 numbers and would ask me the answer at the end, my mind could not keep up at all at any speed, even at the slowest setting I had great difficulty.  right after the first number my brain went into its fog and well...
3 Responses
Avatar universal
What about an MRA to check the blood vessels - did you you have one of those? Was it a whiplash type injury?
563773 tn?1374246539
MEDICAL PROFESSIONAL

Hello,

After going through your symptoms,I feel that either the problem lies in the power of accommodation of the eyes or in the reception of the visual conduction by the brain.

The ability of the eye lens to change its focal length to focus the images of all the objects, distant or nearby on the retina is known as the power of accommodation.
Whenever the eye is focused on a distant object, the ciliary muscles are relaxed and the ciliary muscles are tensed when the eye is focused on a nearby object.

If there is any problem with the ciliary muscles or lens,then distorted vision and difficulty in focussing is there.

Vision centre lies in the occipital region of the brain.Any problem with this centre or the pathway of the optic nerve can cause distorted vision.

I feel that both ophthalmologist and neurologist should work in coordination to find out the diagnosis.

Problems in the inner ear like labrynthitis or meniere’s disease can also cause such symptoms.You are having tinnitus(constant ringing) also.So further evaluation of inner ear is necessary.Inner ear diseases are an important cause of dizziness also.

The tingling in the limbs  can be due to diabetes,TIA, stroke, multiple sclerosis,motor neuron disease or underactive thyroid. Abnormal levels of calcium, potassium, or sodium in your body and a lack of vitamin B12 can also cause tingling in the knee and legs.All these have to be ruled out.

Take care and pls do keep me posted on how you are doing.



611838 tn?1220718729
Never had an mra?  I am going for an MRI in three weeks along with a ton of tests for my inner ear, etc.

I jsut saw an ENT from MEEI in boston and he thinks after looking at me, that I might have MAV, but that doesn't make sense, as it looks like in MAV that most of what people report isn't 24/7, and my problems are 24/7,

my head always feels full, ears pop, eyes have aura, visual snow, things move visually as my eyes move around in opposite direction (if I look left, objects seem to to scroll right, my eyes get to them before they mentally should)

I also get after images and well, put short, it all gets worse when theres more stuff moving, when I am moving, or both, and I work in retail where people are walking all over the place and my store is large and visually buzy, so its no fun, its hell.

Here's something weird to, since I an remeber having this disorder, I can send my eyes, and face into something that resembles an epileptic fit!!! If I relax them they go off the charts all over the place on there own...  My face conterts, the musles spasm, and my eyes go 90 miles an hour all over the place.

Thanks for the ideas so far, any other ideas?

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