undiagnosed condition

[erikj]

Hi Everyone -

I'm new to the forum and I've been living with a condition for almost two years now that is undiagnosed, but is thought to be Vestibular (balance part of your ear) related.  I had three acute attacks back in late '05 and early '06 that basically threw all my senses out of whack and the predominant feeling i remember was the floor feeling like it disappeared beneath me and I became very light-headed and unsteady.  After the third acute attack (which brought me to the ER), the symptoms have persisted and haven't gone away since.  My chief complaint is feeling unsteady on my feet, having brain fog and feeling detached from the real world.  I don't get classic vertigo, but rather at times feel like the ground is moving or throbbing beneath my feet.  Other symptoms include pressure in eyes, ears, visual auras, sensitivity to changes in light, etc.  These symptoms seem to come and go though.  

The reason why I'm in the MS section is b/c within the past 6 weeks, I have had three isolated incidents of muscle spasming coupled with prickly pins and needles (mostly in my legs).  The first lasted about 5 days and then subsided.  10 days later, it came back for about a week and then subsided.  Then about a week later (a few days ago), it came back and only lasted about 2 days.

I guess my question is, do any of you that have MS suffer from dizziness/unsteadiness as a consistent symptom?  Also, has anyone here been misdiagnosed with a vestibular condition, only to find out that it's really MS?

So thats my run up to present.  And these are the tests that I've had done so far:

CT Scan (May 2006) -- normal
MRI (July 2006) -- normal
Complete Eye Exam (April 2007) -- normal
Hearing tests (April & July 2007) -- normal

My next step is to get the battery of Vestibular testing done to rule out that it is eithe rmy ear or not that is causing all this.  If not, it's probably off to the Mayo Clinic.

thanks everybody!!

erik

[erikj]

Quix -

Thanks for getting back to me.  Couple answers to your questions ---

My dizziness is not true vertigo, as in the room doesn't spin around me or me around the world.  I don't weave back and forth down the hall and miss doorways.  Sometimes I'll drift a little bit, but never a sever amount.  It's more of a general unsteadiness that i feel.  Sometimes the ground feels like it's moving or rumbling beneath my feet.  But most times, I feel like I just have a braing fog and just in general don't feel sharp.  i almost feel detached from the world, in an almost pergatory between being awake and asleep.  And I also feel like my brain is tired from constantly scanning and sometimes I feel like there is just information overaload that my eyes have to deal with.

I have had no hearing loss - i've had two hearing tests and they both came back normal.  And my hearing doesn't seem to flucuate either.  I do get tinnitus sometimes, but not often.

Noted on getting another brain MRI.  I'll mention it to my otoneurologist.

Is there anything else that could be causing these symptoms independent of MS?

thanks,

erik

[Quixotic1]

Hi, and Welcome to the forum!  I am the resident and unofficial MD here and I happen to have both chronic, intractable vertigo from Autoimmune Inner Ear Disease and (5 years later developed) MS.  As far as we know the two are not related.

I suspect you are going for Vestibular testing with a specialist called a neuro-otologist (or otoneurologist).  They have many tests available to try to distinguish whether the vertigo is originating in the inner ear or the brainstem.  If it is the inner ear it is a "peripheral" problem and not related to MS.  If it is from the Brain stem or the 8th cranial nerve (both of which are part of the central nervous system), it might be a part of MS.

The answer to your question is that central vertigo is a common presenting symptom in MS.  We see it all the time.  Vertigo in all of it's manifestations is incredibly incapacitating.  We use many different parts of the brain and inner ear to keep ourselves oriented in space.  When that is disrupted the first system that is asked to pick up the slack is the visual system.  Having to depend on the eyes and visual perception of vertical lines and the horizon causes enormous and debilitating fatigue, cognitive confusion, and even memory difficulties.

Have you had any hearing loss, even temporary?  Or does your hearing fluccuate?  If so they should also be considering Menier's disease.  Do you have tinnitus?

The episodes of pins and needles with muscle spasms does not fit with any purely vestibular diagnosis whether central or peripheral.  And the episodes have lasted long enough to be of concern.  The vestibular testing will not likely give you any information on your paresthesias or the muslce spasms.  At this point I would recommend a repeat MRI of your brain and spinal cord done without and with contrast.

As far as constant unsteadiness as a constant symptom - yes, it is common in MS.  Just yesterday I was commenting to someone that I often feel like I'm in a giant cosmic pinball machine (though, again, my vertigo is a separate disoder from my MS)  Do you weave back and forth down the hall and miss most of the doorways you aim at?

I also hope you do not have MS, but your symptoms are now reaching beyond the vestibular and need a re-evaluation.  I hope you do stay with us and keep us apprised of your progress, or better yet, join us for the fun.  Being in Diagnostic Limbo sucks bigtime!  We can help make it more bearable and more understandable.

Are you aware of the VEstibular Disorders of America - VEDA?  they have a list of vestibular specialists across the country and hav some good info on their site:

vestibular.org

I hope this has helped.  I see one of the world's foremost experts on vertigo (he developed the internationally accepted "Epley Maneuvers") so I have learned a great deal about vertigo and how it can bring your life to a total crashing (literally) halt.  You have my utmost sympathy.

Quix, MD

[erikj]

Heather - thanks so much for the kind words.  I'm just tired of scaring myself by constantly wondering what it COULD be.   This is the year I promised myself i would find out once and for all.  I'll keep you guys posted for sure.

[Heather3418]

My heart just breaks for what you are having to endure.  Of course, I hope you realize that all of us HOPE that this is NOT MS.  Would you PLEASE keep us informed about your testing and the results?  And also...please be assured that we will stand by you, every step of the way...through this long process.

We are here for you buddy.  Put your trust in what I say...you never take a step alone, when you have the fine people on this forum, walking with you.

BIG (((HUGS))))
Heather

[erikj]

Thanks Guys.  I'm going to see what this Vestibular testing proves and then proceed from there.  I know that it's possible that there could be multiple diagnoses that my symptoms could fall into, so I should just stay calm and wait for the test results.  It's tough sometimes though when you have search the net and find scary things.  I feel like my life has been on hold for the past two years.  I'm eager to find out what this is so that I can just accept it and move on.

thanks again,

erik

[Jazzyfizzle]

Hello and welcome to the forum,

I always hesitate to give advice when directly asked for MS diagosee's (sp? lol) as I have a couple different opinions on my situation. My Neuro believes my illness is a combination of complications from diabetes, stroke, and chronic epstein barr virus.
While there is no doubt that I have diabetes and Ebv, another doctor states his diagnosis is also MS. So I'm kind of a limbo-lander as my own Neuro has not agreed with the other's MS diagnosis.

I do suffer from reoccurring light-headedness and unsteadiness also. I have constantly throughout this came up with low blood pressure and low heart rate readings. Recently they discovered (not sure why anyone didn't before this) is Orthostatic low blood pressure, or Orthostatic hypotension.
This can make you feel very dizzy I have been told.

Of course, another thing that comes to mind with the prickly, is diabetes of course. Probably they checked already for these more common possibilties? Just things that came to my mind.

Hopefully someone can stop by and offer some answers for you,

Jazzy

[Wobbly]

Hi Erik, I have not yet been Dx, the Dr say Probable MS....one of my first symptoms were the dizziness you are talking about.  Where the room moves back and forth and I couldn't stand up or get up from where I was.  After the spells I would be off balance and foggy for quite a few days, later on I got the pains and leg spasms... The Dr do not know what it is yet.. I've had a couple MRI which showed some lesions, but they said not MS?

I did have the ENT Ear specialist test me a few times and said it isn't my ears??

Have you had blood test done yet?  

keep in touch
Andrea

[Heather3418]

Welcome to the forum.  I feel better passing this over to our forum member "Quix."  She is more versed in the trouble you are describing.  I just wanted to make sure that you were welcomed and understand that your question is important.

Heather