Spinal Tap

[MsRenay]

I have a history of seizure disorder along with Sjoegren's syndrome.  I was recently in a sever car accident and was sent to a neurologist to check me over since I'd had transient tingling in my arms since the accident, and a very bad case of whiplash.  I was almost immediately diagnosed with MS after the doc watched me walk and studied my eye movement.  Not exactly what I wanted to hear.  He ordered an MRI that, though not conclusive, did show white spots that I was told could either be MS, Stroke, or early Alzheimers.   I saw him again today, and though he has officially already diagnosed me with MS has now ordered a spinal tap to clinch the deal.

I think I'm just in shock, to have gone to a doctor with whiplash and come out with a diagnosis of MS.  My first reaction was that I must certainly have a quack neurologist.  Everyone in the health care industry that I know, and I know a few, once finding out who my neurologist was, told me he is the best there is, at least in this area.  

I guess my question is this...do I go ahead with a spinal tap even though he seems convinced of my disease?  Or not bother.  I have noticed much talk in this forum regarding MRI's, but nothing regarding spinal taps.  Is that procedure fallen out of favor?  Am I so out of it that unlike a lot of you, I have symptoms I'm numb to at this point, and as an odd reversal, the doctor is trying to convince ME that I have the disease?  I'm rambling at this point.  If any of you have undergone a spinal tap to diagnose MS, I would like to hear about it.

[MsRenay]

Thanks....I'm afraid the cat hasn't mastered the waiting on me part...but I'll try to lay low.  I didn't realize the worst of the headache could come so long after the procedure.

Thank you...

[Deb61]

I'd keep your head flat on the bed and drink lots of caffeine to prevent a worse headache later on.  Get someone to bring you meals and eat in bed and treat you like a princess!  You need a little tender lovin' care right now.  Give the place where the spinal tap was drawn to seal up.  If you have to be on the computer, use a laptop and prop it up in a way that keeps your head flat.  

My headache developed 48 hours after my LP.  I think it was because I got a little over-confident with the lack of headache that I had the day of and day after my LP.  

Take care!  Now's a good time to be waited on hand and foot!
Deb  

[MsRenay]

Hello...

Had my lovely spinal tap today...took 10 tries to get the needle in the right place.  Have a headache, not too terrible at the moment.

I finally read my MRI report.  The conclusions included 'small vessel ischemic disease, demyelinating disease, and vasculitis or gliosis from a previous infection or inflammation.  Plus small bilateral sublenticular cysts.  I don't have a clue what most of this means save for the demyelinating disease, and ischemic has something to do with stroke.  None of it sounds good, will see the doc again next week to discuss the findings in the CSF and where we go from here.  I'm discouraged, but am well aware that an untrained person can read a report and panic even if it isn't necessary.  If you have read these types of findings and can translate for me, it would be appreciated.  The lesions are .7 cm on the right and .8 cm on the left.  Signal abnormality in the periventricular and subcortical white matter, and a vascular flow void in the proximal intracranial vasculature.  Eyes are deviated to the left.  Help.  
Even 'googling' these terms is turning up little....Thanks...

[Quixotic1]

Hi, there.  I see your dilemma, but I have the same question as Santana.  Sjogren's Syndrome is one of the known mimics that most closely resembles MS.  The brain lesions can look the same, it (unlike most mimics) can cause spinal cord lesions. However, CNS-SS lesions do not enhance with contrast.

On an LP the result is usually a normal to mildly elevated protein.  The IgG Index can be elevated (as in MS) and there can rarely be Oligoclonal bands (these are more frequent in MS).  

There are reports of patients having both diseases.  Wow, what a conundrum!

Here is an interesting article on CNS-Sjogren's: Don't worry about the talk about psychiatric disorders.  Any disease that causes lesions in the brain (MS, Lupus, SS, strokes, encephalitis) can present with psychiatric disturbances.

http://neuro.psychiatryonline.org/cgi/reprint/11/2/241.pdf

Keep us posted.

Quix

[santana8]

I am in the process of getting a dx. I had multiple white matter  lesions on my brain and I had virtigo so bad that I couldn't walk straight and also a possitive VEP. That's a nerve conduction test to check for slowing of the nerve impulses from the eye to the brain. It was positive. I also have tracking problems that are the result of a visual field defect.  The first Neuro I saw dx was MS just on this evidence alone. He hadn't even taken a bloodtest. He sent me out of his office with a bag of rebiff injections without even explaining how to give  myself a shot.

I immediatley felt unsure of him as he was so rushed in his dx and didn't seem interested in further test. He did take the effort to call my insurance company to try to get a prior approval for the Rebiff since my insurance company at first denied coverage because of lack of the appropriate testing for this dx. He seemed more interested in getting the meds covered than checking me out for other possible causes.

I got a second opinion three weeks later. This Neuro is still my doctor and has been for 2 years. He ordered another MRI this time with contrast which the first neuro did not order. He took bloodtest which all came back normal. He done an LP which came back negative and showed no O banding. He also ordered a polyomerce chain reaction test on the spinal fluid to check for viral and bacteria  causes. All negative.

I have had six MRI's every six months  for two years looking for new lesions or enhancement. All six have shown no change, no new lesions, and no enhancement.

My neuro thinks I may have had something called ADEM. acute dissiminated encephalomyelitis, which is inflamation of the brain and or spinal cord. It is indistinguishable from MS at presentation both clinically and radiolocically. The only difference is that ADEM doesn't have any more attacks. A one time attack, unlike MS.

My neuro told me that eventhough he thought it looks like ADEM that It could still end up being MS. The only sure way to know is watching me both clinically and with  MRI.

I am curently in the process of being checked for sjogren's as I have dry eyes and mouth.
And I found out recently that it too can cause white matter lesions as well. according to Quix it is the closest mimic for  MS. Has your neuro considered that the sjogren's might be what caused your white matter changes?

I'm not saying that you don't have MS. All I'm saying is from personal experience please take control of your own health choices. I mean check up on and double check up on whatever your doctor tells you. If I had not been scared into getting myself educated by reading everything I could get my hands on about my situation, then I wouldn't have known that the first neuro was not thourough.

MS has a lot of mimics and these need to be ruled out before they can be sure it is MS. If he is a good doctor he won't have a problem doing the work to rule out everything else(especially the sjogren's) that it may be.

Take care
Santana8

[MsRenay]

Thanks for your straightforward comments.  It was the MRI combined with the eye tracking problem, combined with the history of Sjoegrens and seizures that gave him enough material for his diagnosis. The walking was him just looking to see if I was a bit uncoordinated.  I am, but have been almost forever.  If the spinal tap doesn't show anything too unusual, I'll definitely get another opinion.  However, he isn't the first doctor to tell me this.  Another doctor, 15 years ago told me the same thing and I completely blew him off.  I've been very, very active my whole life and find it impossible that I could be a candidate for the disease in spite of evidence to the contrary and how much more difficult it is getting for me to remain active.  Good old denial...it has its place?  I'll let you know what the LP says and definitely do more reading....Thank you.

MsRenay

[essdipity]

In your shoes I'd be saying Whoa Nelly!  Many a neurologist will practically fall over to IGNORE an obvious case of MS, why I don't know. That's almost the norm. The opposite is much more rare. Still, I've NEVER heard of a doctor watching someone walk and looking at their eyes and immediately diagnosing MS. Is there such a thing as an "MS walk"? I don't THINK so, unless we're talking about the charity fundraiser. And if Alzheimer's looks like MS on MRI, that's the first I've heard of it.

MRIs of course are important, as are lots of other tests. Have you been told by an ophthalmologist that you have Optic Neuritis? ( Not by the neuro, who may have seen nystagmus, which can have other causes.)  That's important in your case. Has blood work been done to rule out MS mimics?  A lumbar puncture is a good idea too. The huge majority have one before diagnosis. Was the neuro's physical exam thorough? It should measure lots of things and take a minimum of 30 minutes. An hour isn't too long.

Please read our Health Pages, maybe more than once. You are entitled to a really good evaluation before ANY diagnosis is made. This is the first time I've ever heard of a neuro jumping the gun. Proceed quickly but deliberately. This is your life he is messing with.

ess

[MsRenay]

Thank you for your insight.  It hadn't occurred to me that before he would start me on meds that he might require the spinal tap.  I've decided to go through with it. Thanks again...will keep you posted..

MsRenay

[Heather3418]

Even though I was originally diagnosed immediately after MRI's showing lesions in my brain and my spinal cord and an abnormal Neurological exam, I later had a Spinal Tap by another Neurology Clinic, after I switched Neuro's.  They said that the results of the lumbar puncture would "clinch" the diagnosis.

Having an LP is definitely something you and your doctor should decide on together.  If he is sure that it IS MS, then ask him why he wants to do an LP.  If it's just for HIS satisfaction, but he will not start you on the disease modifying drugs without an LP, I would submit to the LP.  If you have MS, it's best to get started on one of these drugs as soon as you can.  They can and do prevent more severe relapses and more frequent lesions, although they do not STOP the MS in it's tracks.  These drugs are all we have in today's world to slow the progression of the disease, so we use what is available to us.  At least I do.

Welcome to the MS Forum and we are so glad that you have decided to join and post with us.  You are now among treasured friends.

Best Wishes,
Heather