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Limbo Landers and Newly Diagnosed This is a place for those who are still in "limbo" and those who have been recently diagnosed with Multiple Sclerosis . A place to share your thoughts and experiences.

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  #1  
Old 09-06-2012, 07:51 PM
tuesdayschild tuesdayschild is offline
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Location: Tampa, FL area
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Normal LP, Abnl VEP, Nonspecific Lesions

I think I"m going to be stuck in limbo. I went to the hospital and got a copy of my LP results since I'm not seeing the neuro til the 24th. It was normal. So I have

MRI - one lesion each in the periventricular white matter of the frontal lobe and the parietal lobe. They're nonspecific and the neuro's not inclined to call them MS lesions.

Abnormal VEP bilaterally.

Normal LP.

Dreading the appointment on the 24th because I don't know if I can stand to hear that we need to keep looking....

Sorry, I just needed to vent a bit.
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  #2  
Old 09-06-2012, 11:59 PM
Redwings Redwings is offline
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You might be stuck in limbo, but you might not. Your brain lesions may be nonspecific. And your VEP, though abnormal, is also nonspecific. But taken together, the two have more meaning.

Although your lesions are nonspecific, they're periventricular, which is a common location for MS lesions. And there are only so many things that can cause an abnormal VEP, and most of them are easily ruled out. That makes two findings that are common in MS. The normal LP doesn't support a diagnosis of MS, but it doesn't rule it out, either.

Depending on your other history, some neurologists might feel that the MRI and VEP are compelling enough evidence to meet the MS diagnostic criteria. But some neurologists won't. If your neurologist is one of the latter, it might be worthwhile to get another opinion specifically about the significance of those findings.
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  #3  
Old 09-07-2012, 06:19 AM
22cyclist 22cyclist is online now
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Quote:
Originally Posted by tuesdayschild View Post
I think I"m going to be stuck in limbo. I went to the hospital and got a copy of my LP results since I'm not seeing the neuro til the 24th. It was normal. So I have

MRI - one lesion each in the periventricular white matter of the frontal lobe and the parietal lobe. They're nonspecific and the neuro's not inclined to call them MS lesions.

Abnormal VEP bilaterally.

Normal LP.

Dreading the appointment on the 24th because I don't know if I can stand to hear that we need to keep looking....

Sorry, I just needed to vent a bit.
Are you seeing an MS specialist? If not, you need to.

Otherwise, sometimes it just takes some time unfortunately. You may have to wait now to have another episode for a diagnosis. That is just how it is...

You never know. At least you have your baseline testing and that is a good place to start.

Hang in there.
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  #4  
Old 09-07-2012, 06:48 AM
JerryD JerryD is offline
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Join Date: Mar 2012
Location: King of Prussia, PA
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If you have a 'real' MS neurologist, you will have to do a lot of tests to get a dx of MS or rule it out. If you continue to get questionable results and unsatisfactory treatment options, I suggest you consult a second or third opinion.
I saw 4 neurologists for my PPMS dx. And, even though you won't hear anything from your MD's about diet and exercise, diet and exercise are, IMO, the key to feeling better with these neurological symptoms. Good luck
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  #5  
Old 09-07-2012, 10:01 PM
tuesdayschild tuesdayschild is offline
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Join Date: Jul 2012
Location: Tampa, FL area
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Thanks for the support

My neurologist, as it turns out, is more of a stroke specialist than an MS neurologist. She is pretty up on MS but I've inquired about getting in with our local TRUE MS specialist. You have to sort of audition for an appointment with him. Send him office notes from the current neuro, MRI report, evoked potentials report, all lab work, and LP and then he'll decide if his staff can schedule an appointment.

It's a good point that, if I've accomplished nothing else, I've established a baseline for future reference.
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