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Eff fibro

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Undiagnosed
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10/2014
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Hi everyone, so lately I've been "blanking out" for a quick second here and there, a few weeks ago I started having moments of complete disorientation, not recognizing where I am or remembering what I'm doing. I saw my primary care dr and he scheduled me for an EEG to check for absence seizures and referred me to a neurologist in the city (Boston). The afternoon after my PCP apt, I was in the shower and when I closed my eyes I lost balance. I did a neuro test called the Romberg test and it was "positive" which may indicate a lesion. The only other cause that seems to fit my symptoms to any extent is B12 deficiency but I've been on a supplement for a year and just had my levels checked, they are on the high end of normal.
So when I started having the pains 4 months ago, they were intense and caused violent limb jerking. I googled that and had some symptoms like those described in MS. So I saw a neurologist and had a brain MRI amongst many other tests. Since then, my symptoms seem more consistent with fibro, but considering this positive Romberg, I'm wondering if there's something more to it... and I'm wondering if the radiologist reading my MRI missed something.
Does anyone else lose balance only when they close their eyes? (My balance is awesome with eyes open). Does anyone else ever get disoriented?
 

1sweed

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1,956
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DX FIBRO
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That test which is based on balance can be a sign of spinal difficulties so it is not to be taken lightly, but then I have very poor balance and did not pass this test either. I think the results are best left up to the neurologist to decide if it is important or not. Another doctor you might see is a heart doctor. Missed beats or odd heart rates can also cause blanking out spells. Certain medications in high does can also cause these symptoms. My mom has spells like seizures where she is walking along and suddenly her legs stop working and she has a blank unresponsive stare for about a minute. Without me constantly with her she would fall down. Not to say this is the same as you, but it goes to show there can be many reasons for your blanking out spells. Be checked out well before just settling for fibro being the answer. In the meantime don't close your eyes unless your sitting down. :) Good Luck in getting your diagnosis. :)
 

Eff fibro

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Joined
Oct 13, 2014
Messages
38
Reason
Undiagnosed
Diagnosis
10/2014
Country
US
State
MA
Thanks sweed! I have been trying not to worry about the balance test but everything I'm reading about spinal lesions is flipping scary! With eyes open my balance is generally great, except for those blank out moments. My balance changes drastically if I take away aid from my eyes... so I know there's a disconnect somewhere. What's causing the disconnect? I know the neuro will have a better idea, but in the meantime I'm trying not to be scared. My cousin in a nurse practitioner and said that I should go to an ER now instead of waiting 2 weeks for my appt. He said if they're absence seizures there could be brain damage happening if left uncontrolled, or with our family history of blood clots, I could be having TIAs (mini-strokes).
I did see a heart doctor a few years ago but considering new symptoms I think it would be good to get evaluated again.
Wouldn't a fibro doctor know what tests to run to rule out other look-alike conditions? I felt like my Rheum didn't pay much attention to what had or hadn't been ruled out.
 

1sweed

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Messages
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Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
Your Rheum, would mostly look for things in his field. As you know everyone has their own little niche and he would not look for something out of his field. Now if blood work showed something then he might tell your family doctor to refer you, but otherwise it is pretty much left up to you to suggest it or make a appointment to get it checked out. TIA''s or blood clots if in the brain would require a MRI and that is something the neurologist could do if he feels it to be necessary. I don't think the absence seizures would cause brain damage since as you say this lasts only for a very short time. There is another type of seizure called a complex partial that causes short blankness spells as well. So try not to worry, but be prepared to see another doctor if the neurologist finds nothing. :)
 
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