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Should I go through with the spinal tap?


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Old 03-02-2011, 10:07 AM   #1
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Should I go through with the spinal tap?

Hi!
I'm 22 and for the past 6 months have been experiencing consistant shakes in both hands and my co-ordination has taken a sudden drop (I'm a musician so unfortunately these things are huge to me). I have also been having bladder problems so my GP sent me to a neurologist who sent me for an MRI to test for MS.
I got the results of the MRI back today and it was clear, so the neurologist wants to have a spinal tap now but I'm not sure if I want to go through with it. Surely the MRI would have shown up if something was wrong, it was both of my head and c-spine. Now I feel like a drama queen who read too much into her symptoms and I'm afraid I'm wasting medical professionals time as well. My friend seems to think that I would be 'feeding my own hysteria' if I had a spinal tap done and now I'm very confused. It seems to be a rather huge step to take as a cautionary measure.
I suppose any other symptoms I have would be a weird sleepiness, dizzy sometimes, and extreme forgetfulness.
I really don't know what to do

 
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Old 03-02-2011, 11:10 AM   #2
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Re: Should I go through with the spinal tap?

Welcome. Though your MRI is currently clear, it could change shortly if you have MS. The LP is just one of the tools used to diagnose MS. The result of the LP could also point towards non-MS possibilities. As there are over 400 disease possibilities which present with MS-like symptoms, you should get it done. You need to try to provide your doctors with as much information possible (such as MRI, LP, etc). This will help them determine what you might have. If you are lucky, you have an easily treatable problem. As you have come so far in your testing, you should complete the process. Have you had a VEP (visual evoked potential)?

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Old 03-02-2011, 12:03 PM   #3
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Re: Should I go through with the spinal tap?

Quote:
Originally Posted by Nono88 View Post
Hi!
Surely the MRI would have shown up if something was wrong, it was both of my head and c-spine.
Not necessarily.

I had clear MRIs as well as other tests all coming back fine, except for the Lumbar Puncture/spinal tap. My lumbar puncture was positive and I was given a clinical diagnosis of MS. MS is and has always been a clinical diagnosis.

It's up to you if you want to follow through with the Lumbar puncture but it is simply another diagnostic tool which may or may not give you answers to your symptoms. I would hope your doctor has also done testing to rule out many of the other diseases/conditions which share symptoms similar to those as MS.
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Old 03-02-2011, 03:58 PM   #4
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Re: Should I go through with the spinal tap?

I also agree, although the Spinal Tap isnt conclusive for MS; it can be conclusive to rule out other things! The test itself is actually quite simple, although Ill be the first to acknowledge that the anxiety of having it done is quite bad...
once you have had one, youll wonder why you were so afraid of it! Its really no big deal...

But Id have it done, you need to rule out everything else to get a MS dx, there is no other way they will conclusively give you a dx. And, as others have said, the MRI is likely to change the next time you have one (which should be in 6 months).
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Old 03-03-2011, 12:08 AM   #5
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Re: Should I go through with the spinal tap?

Thank you all for your quick replies!
@MSJayhawk, first of all thank you for your warm welcome! I asked my doctor about the VEP as that's how my aunt was diagnosed, but he said it was not really standard procedure in Ireland anymore, but in my head it seemed the next logical step before very big needles

@Snoopy61 you said I would hope your doctor has also done testing to rule out many of the other diseases/conditions which share symptoms similar to those as MS. (sorry couldn't figure out how to quote in one big reply :P) What other tests should he have done? My GP had my bloods taken and then apart from a few physical tests in the neurologists, I was just sent for the MRI...

@MSNik, the anxiety is unreal, I googled a LP and the size of the needles is terrifying, my doctor said I'll need someone to collect me from the hospital after it, is that true? I don't really believe him as he said I should bring someone along for the MRI yet I managed that one on my own because I figured it was nothing but a fancy x-ray

I've been reading some of the other posts here and someone mentioned a contrast MRI, what is the difference between a contrast MRI and a regular MRI?
Thanks again
N

 
Old 03-03-2011, 04:59 AM   #6
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Re: Should I go through with the spinal tap?

Quote:
Originally Posted by Nono88 View Post
@Snoopy61 you said I would hope your doctor has also done testing to rule out many of the other diseases/conditions which share symptoms similar to those as MS. (sorry couldn't figure out how to quote in one big reply :P) What other tests should he have done? My GP had my bloods taken and then apart from a few physical tests in the neurologists, I was just sent for the MRI...
The amount of bloodwork is quite large, anywhere from 10 to 12 vials of blood is usually taken. A Urologist specializes in the urinary tract and could be helpful in determining your bladder problems, some of which MIGHT indicate MS. Do you know how your Neurological exam was? Did he tell you if anything would be considered abnormal?

Some other testing that some have done: EEG, EMG, VEP. Testing depends on the thought process of your doctor and what he thinks might be going on.

MRI with contrast (dye) is used to "highlight" active lesions in MS. You can still see lesions without contrast you just can't "see" if any are New or currently "active."

To QUOTE: click "quote reply" Delete out what you don't want, leave only the part you want. Always leave the quote marks intact at the top and bottom
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Old 03-03-2011, 05:06 AM   #7
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Re: Should I go through with the spinal tap?

Quote:
Originally Posted by Nono88 View Post

I've been reading some of the other posts here and someone mentioned a contrast MRI, what is the difference between a contrast MRI and a regular MRI?
Thanks again
N
The MRI with contrast uses a colorant which will help light up any active lesions. The contrast is done right after the regular MRI.

The VEP is very sensitive to mild changes of interference. I do not know why they would no longer use it. If you can, I would go the VEP route along with the MRI with and without contrast.

In 2002 when my condition really worsened, the VEP results had my neuro order an MRI of my thoracic spine where active lesions were clearly indicated.

I hope you get the answers you need.
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Old 03-03-2011, 06:21 AM   #8
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Re: Should I go through with the spinal tap?

Hi there, yes you should have someone with you for a spinal tap (lumbar puncture). Although the anxiety is incredibly high when its your first time, its really NOT that bad. The key to having a successful LP is to stay flat! You absolutely HAVE to remain flat on your back for at least 8 hours after the procedure is done.
Yes, you can get in a car and go home...and yes, you can get up to pee- but other than that, no matter "how good" you think you feel, remain flat on your back, staring at the ceiling (my husband actually put the TV high up on the dresser for me so I could watch it without bending forward or sitting up on pillows) for at least 8 hours.

Caffeine is recommended...coffee the morning of- lots of cola or mountain dew types of soda the day you have the procedure....tons of fluid intake, which means tons of getting up and down to pee! But, other then that, stay flat. Youll hear about the dreaded LP headache. This only occurs when the patient doesnt listen to their doctor and gets up and tries to do too much too quickly. If you really listen and you really remain flat, it wont happen.

Ive now been thru 2 successful LPs with no problems whatsoever.

Another trick is, do not look at the table when you go in. The procedure can be done in an outpatient surgical setting, or even in a doctors office. It can be done under flouroscopy (which is like an Xray) or it can be done without. Ive had it done both ways, neither is preferable to me, however under Flouroscopy, they can see the nerves which makes it more percise... The procedure can be done one of two ways, one is curled up in the fetal position laying on your side, the other is bending over the table, with your spine exposed.
Youll feel the novacaine needle going in- its a quick sting, but after that, nothing. There will be a tiny bandaid over the area when its over and you can shower that night or the next morning. You might have a minor ache in the area where they do it, but nothing that over the counter pain meds wont help...its really honestly a piece of cake, but I wont deny how scary it is.
Dont look at the needle. Go in and get it over with! My doctor actually prescribed me a Xanax to take before I got there to take the edge off....because of this, too, I couldnt drive myself. You wont want to drive yourself....take a trusted friend, husband/ signficant other or family member with you.
Let us know what you decide! I wouldnt hesitate to do it again...
Nikki
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Old 03-03-2011, 09:42 AM   #9
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Re: Should I go through with the spinal tap?

Quote:
Originally Posted by Snoopy61 View Post
Do you know how your Neurological exam was? Did he tell you if anything would be considered abnormal?
He did a few tests, one was the Babinski test, and my toes went the wrong way, also rubbing my heal down my shin bone was not fluid and touching my nose with my eyes closed was a bit of a fail And he was concerned because he couldn't get a reflex action from my right leg. My neurologist is a bit of a pessimist though, he scared me in my first consultation by stating after the exam that he thinks it's a serious neurological problem, so I'm hoping he's just jumping the barrel to be honest.
Quote:
Originally Posted by MSNik View Post
Caffeine is recommended...coffee the morning of- My doctor actually prescribed me a Xanax to take before I got there to take the edge off....because of this, too, I couldnt drive myself. You wont want to drive yourself....take a trusted friend, husband/ signficant other or family member with you.
Caffeine is no problem!! A welcome suggestion! I don't have Xanax but I have beta-blockers, do you reckon they would do the same trick? I'll be able go there alone though? and get someone to collect me? I think I will go ahead with it now, this forum is making life a lot easier as my mum and closest friend are just too confusing to talk to!

Quote:
Originally Posted by MSJayhawk View Post

The VEP is very sensitive to mild changes of interference. I do not know why they would no longer use it. If you can, I would go the VEP route along with the MRI with and without contrast.
I've no idea why the doctor won't send me for a VEP, I would have preferred it before the LP really, I'm not afraid of needles (although they look rather big for this procedure :P) but I am rather wary of things going near my spinal chord. I'm also a bit wary of the neurologist, he's very focused on my family medical history, but I thought MS wasn't genetic?!

Thanks again everyone!!!

 
Old 03-03-2011, 10:21 AM   #10
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Re: Should I go through with the spinal tap?

Nono88,

With an abnormal Neurological exam it appears as if there is something Neurological going on. Sometimes it takes awhile for testing to show what might be going on, rather it's MS or something else.

Hang in there
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Old 03-03-2011, 10:43 AM   #11
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Re: Should I go through with the spinal tap?

Quote:
Originally Posted by Nono88 View Post
He did a few tests, one was the Babinski test, and my toes went the wrong way, also rubbing my heal down my shin bone was not fluid and touching my nose with my eyes closed was a bit of a fail And he was concerned because he couldn't get a reflex action from my right leg. My neurologist is a bit of a pessimist though, he scared me in my first consultation by stating after the exam that he thinks it's a serious neurological problem, so I'm hoping he's just jumping the barrel to be honest.

I've no idea why the doctor won't send me for a VEP, I would have preferred it before the LP really, I'm not afraid of needles (although they look rather big for this procedure :P) but I am rather wary of things going near my spinal chord. I'm also a bit wary of the neurologist, he's very focused on my family medical history, but I thought MS wasn't genetic?
Your Babinski reflex is one of the tests my neuro regularly checks my progress. I do not think your neuro is being a pessimist, rather I think he is being objective. Your reflex would indeed indicate that something indeed is occurring.

They have yet to prove genetic component for MS. Studies appear to indicate that there is a higher likelihood of siblings getting MS, but there are some families with a history of MS. It might be related to the genetic code for immune systems. Neurologists are always looking through family histories. Also, since MS is not yet absolutely diagnosed in your case, your doctor might be looking at another disease (there are over 400 which present with MS like symptoms).
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Old 03-03-2011, 01:24 PM   #12
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Re: Should I go through with the spinal tap?

Hi again. I dont believe a beta blocker is going to take the edge off enough to be considered "like Xanax"; however if you feel that you are going to be nervous, you should talk to your doctor about taking something ONCE you get there, even if you have to arrive 1/2 hour early. You dont want to take a drug like Xanax or Vicoden if you havent used them before and attempt to drive or navigate the test, alone.

Yes, more then likely if you can get there and have someone to collect you, they will allow you to show up alone...but do you need to? No one to take you and wait with you? Although its unwarranted, I can almost guarantee youll be nervous....its that sort of test.

About your mum and your friend....this is the beginning of YOUR journey. Most of our loved ones have bent over backwards to help us "find answers" or "convince us" its nothing. They mean well, they love us, but in the end no one will understand what you are dealing with better than people who have been where you are. At times, this is the scariest thing in the world, but for those of us who have been there, we are living proof that you too, will get thru it. I tell everyone if you get the dx, wait a year. Dont tell just anyone or everyone about having MS- you start to get a handle on dealing with the disease and how youre going to handle it, after 6 months to a year and at that point, you probably wont want to shout it to the world, because it really is manageable. I know that some of my friends had me in a wheelchair and disabled as soon as they heard the news. 5+ years later, Im as healthy as I ever was....grad school, fulltime job, 3 kids and running my household. Please believe me when I tell you, this isnt the worst thing in the world to have to deal with.

Wishing you the best.....ask us all the questions you need to...thats why we are here!
Nikki
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Old 01-27-2012, 04:42 PM   #13
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Re: Should I go through with the spinal tap?

I understand your hesitation to get a spinal tap when you are not necessarily showing signs of multiple sclerosis on your MRI. I am in a similar, yet opposite position, I had a MRI done that showed signs of lesion growth on my brain (none on the spine), yet I'm not symptomatic whatsoever of M.S. However, I decided to do the spinal tap so that I can get more evidence either way.

You shouldn't doubt yourself or consider yourself paranoid for your symptoms, you know your body more than anyone, and you're saying 'Something isn't right here', listen to yourself.

Also, some of your hesitation may be the fear of having a spinal tap done. However, I can assure you having a spinal tap sounds way more painful and invasive than they actually are. I got a spinal tap last week and I wish I would have known that I didn't have to be nervous.

The worst of the pain is a numbing shot that lasts maybe 30 seconds. After that you feel nothing at all. I didn't receive any sedation drugs and I found the procedure to be quick and simple. I'd recommend scheduling the MRI, if you choose to have it, through radiology so that they can take a CAT scan of your spine and then they know exactly where to make the injection. Other than that, the worst part really is just that small numbing shot where you feel a burning sensation.

According to my doctor, the worst part of a spinal tap for some patients can be headaches caused by the loss of spinal fluid, but lots of water and Ibuprofen work to help with that. I had a slight headache immediately after the procedure and took two Ibuprofens and my headache did not return.

Good luck to you, listen to your body.

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Old 01-27-2012, 04:49 PM   #14
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Re: Should I go through with the spinal tap?

Quote:
Originally Posted by Mmonroe View Post
I understand your hesitation to get a spinal tap when you are not necessarily showing signs of multiple sclerosis on your MRI. I am in a similar, yet opposite position, I had a MRI done that showed signs of lesion growth on my brain (none on the spine), yet I'm not symptomatic whatsoever of M.S. However, I decided to do the spinal tap so that I can get more evidence either way.

You shouldn't doubt yourself or consider yourself paranoid for your symptoms, you know your body more than anyone, and you're saying 'Something isn't right here', listen to yourself.

Also, some of your hesitation may be the fear of having a spinal tap done. However, I can assure you having a spinal tap sounds way more painful and invasive than they actually are. I got a spinal tap last week and I wish I would have known that I didn't have to be nervous.

The worst of the pain is a numbing shot that lasts maybe 30 seconds. After that you feel nothing at all. I didn't receive any sedation drugs and I found the procedure to be quick and simple. I'd recommend scheduling the MRI, if you choose to have it, through radiology so that they can take a CAT scan of your spine and then they know exactly where to make the injection. Other than that, the worst part really is just that small numbing shot where you feel a burning sensation.

According to my doctor, the worst part of a spinal tap for some patients can be headaches caused by the loss of spinal fluid, but lots of water and Ibuprofen work to help with that. I had a slight headache immediately after the procedure and took two Ibuprofens and my headache did not return.

Good luck to you, listen to your body.

Welcome.

The thread to which you replied may not elicit a reply from the original poster. Welcome to the boards. I am glad you are progressing through your tests and have made it through the LP!
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Old 01-29-2012, 07:57 PM   #15
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Re: Should I go through with the spinal tap?

snoopy 61 wrote "My lumbar puncture was positive and I was given a clinical diagnosis of MS."

MSNIK wrote "although the Spinal Tap isnt conclusive for MS; it can be conclusive to rule out other things!"

Which is it? I've always been so confused about the LP. Some say it does give a DX, while others say it does not.

nono88: you can't get a DX without the proper tests. I hope your feeling better by now. I know it sucks. If you have someone offering you the tests, then I would jump on them. I've been left in limbo since September, regardless of how I'm feeling. Don't listen to your friend UNLESS it's positive advice.

Hope everyone is doing well, I haven't been on for a while.

 
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