to spinal tap or not

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to spinal tap or not

Postby mmpetunia » Tue Mar 19, 2013 9:54 pm

at the time of my diagnosis i was told that i was clinically definite even without a spinal tap, but i was offered one anyways. i declined at the time if a negative tap wouldn't change my dx because i know they can be pretty unpleasant. should i have asked for one? also, i have heard that a dx of MS develops over time--the doc is constantly evaluating and re evaluating at each meeting to be sure that the dx fits. if i continue to have enhancing lesions, then this would be further evidence of MS with or without the spinal tap, right? in other words, more lesions would decrease the likliehood of it being a mimic? i ask because my differential dx was pretty scant. i think the MRI's came back and the doc considered it a slam dunk...12 lesions, 6 in the brain, 6 in the spinal cord with one enhancing (dissemination of time and space?). i asked for additional bloodwork but none of the blood work was abnormal including the blood work for sjogrens and reynauds. my autoimmune panel was actually great showing almost no inflammation at all. i think i am still holding on to a tiny little piece of denial and hoping that something somewhere will prove i don't actually have MS. :?
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
EDSS 1.5-2
http://mylaceybrain.wordpress.com
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Re: to spinal tap or not

Postby CureOrBust » Wed Mar 20, 2013 12:48 am

I have chose against having one. If it fails to show bands, it could still be MS.
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Re: to spinal tap or not

Postby jimmylegs » Wed Mar 20, 2013 5:35 am

the LP is not conclusive - it's just one more checkmark on the dx list. it gives the docs one more piece of evidence to bolster the dx and that's it. as c says, you can still have a 'definite' ms dx without having an LP positive for CSF oligoclonal banding.

the finding of o-bands indicates chronic inflammation. you can act to control systemic inflammation without having an LP test. the only result will be better health. if you have never checked out inflammation factors for different foods, www.nutritiondata.com is an excellent resource.

example, 1c of chopped boiled kale has an IF rating of -226, moderately anti-inflammatory
http://nutritiondata.self.com/facts/veg ... cts/2865/2

kale is a good staple of an anti-inflammatory programme. when you have an inflammatory condition, like ms, the target score for the day is -150.

the database of foods at nutritiondata is huge and excellent. you can often control serving sizes too, when doing calculations, using that little arrow to access the serving size drop down menu.
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Re: to spinal tap or not

Postby mmpetunia » Wed Mar 20, 2013 9:50 am

Thanks I will look into maintaining a -150 for inflammatory foods for sure. I already avoid legumes and eat a dairy and (nearly) gluten free diet that includes a near daily intake of kale :) I would bet that this diet over the last 1+ years is what has led to my low inflammatory markers, but I don't have baseline labs to back that up. Re: LP, just seems like sometimes this test is highly regarded and with such a minimal differential done it makes me wonder sometimes if i should have gone through with it. but my docs words were "even if the LP was negative it would not change my diagnosis for you." which is why I never bothered with it. Sounds like I made the right choice.
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
EDSS 1.5-2
http://mylaceybrain.wordpress.com
mmpetunia
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Re: to spinal tap or not

Postby bananana » Wed Mar 20, 2013 9:53 pm

My advice to you is to avoid the spinal tap unless absolutely necessary. Its one of the most painful things you can possibly experience. Not only do they stick a GIANT needle in your spine (and it hurts like hell!), it also disrupts the equilibrium of your spinal fluid since they remove some of it. That will lead you to have splitting headaches for about 2 weeks every time you want to move your head. Think cluster headache x50. This is one of the most painful headaches you could possibly get. Trust me, its no fun.

Dont do it!

-b
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Re: to spinal tap or not

Postby JeanDeEau » Thu Mar 21, 2013 4:04 am

Think of it like this:
1 - Do you need it? It has been pointed out above that all it does is help the dx.
2 - Do you want it? You have the right to say NO if you want to.
3 - Does it have to hurt? NO. But you can make it easy for yourself. You get a local first. Askfor them to wait an extra five minutes to give it longer to act. That way you do not feel the main needle going in. When it is over, lay flat and do not move. Really. Flat like a board. Take someone with you that you can talk to, because this will be dead boring. Do not even try to sit up for about a half hour to an hour. Then you can sit up and have something to drink. Just stay off the coffee. In an hour, you could be getting up to go home without any headache. Rush things and it will not be nice for you.
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Re: to spinal tap or not

Postby daverestonvirginia » Thu Mar 21, 2013 4:30 am

I did not have one and I would not recommend anyone having one. To be honest I do not know why they are still offering the test?
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Re: to spinal tap or not

Postby jimmylegs » Thu Mar 21, 2013 4:50 am

banana - you describe the post LP headache. there's a lot of talk on here about how to prevent. searching for a few key terms will lead to loads of info and i bet the automatic list of related links at the bottom of this page has some good info also.

i had it and made a point of learning about it when they threatened the ominous sounding 'blood patch' to fix the cord puncture. i prescribed myself strict bed rest at the time and it worked. nowadays i would prescribe zinc for optimal wound healing.

the info the doc needs to prevent the LP heachache phenom is all about needle bevel orientation and the amount of time you stay put after the procedure. i would say a few hours would do it. but it does depend on how much damage is done and how well each individual heals.
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Re: to spinal tap or not

Postby NHE » Thu Mar 21, 2013 5:41 am

jimmylegs wrote:the info the doc needs to prevent the LP heachache phenom is all about needle bevel orientation and the amount of time you stay put after the procedure. i would say a few hours would do it. but it does depend on how much damage is done and how well each individual heals.


The needle bevel should be parallel with the long axis of the spine not perpendicular to it as there are fibers that run lengthwise along the dura, the outer covering of the spinal cord. An analogy might be to think about pushing a chisel through some spaghetti. You're going to cut a whole lot less spaghetti if the blade is parallel to the noodles.
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