New and not diagnosed, lumbar puncture question

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby daverestonvirginia » Thu Dec 27, 2007 6:52 am

I was also under the impression, that it was no longer necessary to have a LP done for diagnosis....that history and MRI are enough. I would not have one. Tell your doctor you just want an MRI.
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Postby cheerleader » Thu Dec 27, 2007 9:02 am

Hi Jennifer-
Hope you had a good holiday, and are not too scared about all of your medical tests...

My husband was dx last March. The protocol in our area (So. California) is MRI and LP. The neuro used it to rule out other demyelinating diseases like Lyme, B12 deficiency, Lupus, etc. The bands in LP show very specific proteins for MS. Although my husband had only one "flare", his LP was positive for MS. His neuro started him on Copaxone right away. He's been on it nine months and is stable. The idea of early intervention with Copax is new, but more popular now.

Make SURE you have a quiet room to lie down in for at least an hour afterwards. My husband was in a quiet room, in a bed, lying down watching tv for two hours before they let him check out. It's very important. Bring in NHE's post on the needle bevel. Most current docs know about this, but it's always good to be prepared.

The more you know, the better informed you are, the more in control you'll feel about all of this. My thoughts are with you. There are many other diagnoses you may receive. Stay hopeful and strong.

blessings,
AC
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Postby lamom » Thu Dec 27, 2007 1:34 pm

thanks so much- I'm going in tomorrow and am quite ok with it all. I called the imaging center yesterday and was reassured that they do the lp's under xray which made me feel better- plus I have a xanax prescription so all should be well!

I won't know the results until jan 14th so will try and update if i can-

thanks again,
Jennifer
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Postby DM » Thu Dec 27, 2007 5:13 pm

Don't worry about it all that much. The fear and anxiety is worse than the procedure. Once it is over, you will sit back and say to yourself that it wasn't all that bad. and nowhere near as painful as expected. Remember, lay down for approximately 2 hours after the procedure, even though you will say to yourself that you feel fine.

It is like a dog...bark is worse than the bite....

Danny
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Postby Smilingface » Thu Dec 27, 2007 6:11 pm

Lamom,

It will be fine! I thought the discomfort of epidurals for childbirth were worse.
The more procedures the neuro has done the better. I had to lie flat for one and a half hours immediately after the procedure. The nurses checked on me a couple of times during that time . Then I stayed flat on the long ride home and drank lots of water. It was necessary to give me a definitive diagnosis. At the time I questioned the necessity of the procedure like you but afterwards (weeks later) was glad to have the confirmation. Good Luck tomorrow!
Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />
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Postby whyRwehere » Fri Dec 28, 2007 2:11 am

Well, I still question why it needs doing. Is this the only way to test for Lyme's, etc? Is there an expert on the forum who can explain how conclusive this test is? And what makes them an expert?
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Postby coomoob » Fri Dec 28, 2007 4:54 am

What a difference a day can make.....

I was driving to work yesterday (12.27.07)....only to have the left side of my face start drooping and my left arm get tingly and cold. Fast forward almost 24hrs and an MRI and several CT's later and I'm told I probally have MS. I'm in the hospital (where I work) right now waiting for my lumbar puncture this morning. Thank you for posting all of this information about LB punctures and how it feels. I didn't sleep well last night worrying about this. I'm still scared, don't get me wrong but you've eased the anxiety.

I work in Nuclear Medicine and have watched several lumbar punctures, needed to inject Indium 111 for Cisternograms...but I never asked the patient how it felt. I think I'm a compassionate guy in my work...but I feel guilty now for not asking people. I don't know what to think anymore.

Ugh....it's soooo weird being on the other side. Wish me luck. :(
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Postby lamom » Fri Dec 28, 2007 6:19 am

aw- I feel for you! I had several days to prepare for the lp- and feel much better about it, but if it was a sudden thing I know I'd be more anxious. Good luck this morning- I'm going in in about two hours to have it done too. It's going to be fine- I've had the epidural which apparently uses a bigger needle and it's totally not bad- for some reason the lp has a much worse reputation. I think because when people are rushed in to the hosp with meningitis (my brother) they use a giant needle to hurry up and get the fluid out, but for ms they can let it drip for 20 or 30 minutes therefore not needing a big needle.

The epidural probably uses a bigger one too to hurry up and get the pain meds in there-

anyway- good luck to you (and me! 8O )
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Postby lamom » Fri Dec 28, 2007 6:21 pm

just an update for anyone who might be looking up information for a future lp-

it was LITERALLY painless. PAINLESS. It was done under xray- and my after the teensy stick from the numbing stuff- I did not feel anything. I was laying face down on the table talking to my husband- I was a little loopy from the xanax but could still feel pain if there had been any- and I felt none. My husband said the needle looked like a hair it was so tiny. I think the tech said they use a size 24?

There are so many nightmare stories out there, I thought I'd throw mine in for anyone who is looking for info like I was. Now the meningitis lp is different- but for ms/lyme etc testing, know that they go out of their way to make it completely comfortable.

My neuro was completely right when he said having blood drawn is way worse- and that's not even that bad.

so there it is- i really do appreciate all of the reassurance before the procedure from you all- know that it really did ease my anxiety. Hopefully I can do the same for someone!

Jennifer
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Postby DM » Fri Dec 28, 2007 6:26 pm

See...we told you so!!!!
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Postby coomoob » Fri Dec 28, 2007 7:37 pm

Typing from my hospital bed via Wifi on my work laptop....

Well...I had my LP today. I wanted to tell you all that it didn't hurt, but I can't say that. :( The needle placement didn't really hurt but when the radiologist (one whom I work with on a daily basis) was trying to get into the spinal canal, he knicked a bundle of nerves. The pain was quite intense running down my leg. It didn't last long but happened several times. He could not get into the first spot because of the nerves and had to move further up my lumbar spine using a bigger 20 guage needle. After the second injection, I had no problem....no more nerve issues and he was finished in abou 5min. So now the spinal fluid is off to the lab to get confirmation.

A note of good news though...I had another MRI of my head and entire spine just before the LP....there are no lesions on my spinal cord. I was SOOO happy to hear that. So, everything is contained to my brain.

The neurologist wanted to rule heart/vessel problems as well (because of the stroke like sytems I had). So after my LP during my 4hrs prone the cardiologist did a TEE (transesophogeal echo) of my heart. So I was sediated with anthesia and had that checked...which helped pass the 4hrs on my back. That turned out ok.

After two days in the hospital and visiting all of my coworkers in other depts in radiology...I have a new appreciation for what my patients go through. It's all very humbling. I'm 27 y/o and shouldn't be having these kind of things...but...tis life.

Good luck to everyone else. I do not want to scare, but did want to be honest.
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Postby Lyon » Fri Dec 28, 2007 8:46 pm

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Postby coomoob » Fri Dec 28, 2007 9:25 pm

The first brain MRI showed multiple lesions, consistant with MS. The second brain MRI confirmed this...as well as checked the blood vessels (havn't heard about that end yet, other than no bleeding on CT). :(

The MRI C/T/L-spine did not show any lesions or infilatration into the spinal canal. :D

I must say...I'm in awe at what difference two days can make in your life. Wed night I was exchanging the last of christmas gifts with friends, eating leftover deserts and having a great time - 12hrs later I was in the ER with what I thought was a stroke - 5hrs after that I learn that I probally have MS - and 20hrs after that I have a LP and other crap that I NEVER dreamed I would have. I'm FAR from a religious person...but I don't think I've prayed so hard since my mom had a cancer scare 1.5 yrs ago. :?

_____________________________________

lamom - congrats on your good LP! I hope the results are just as good!
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Postby Lyon » Fri Dec 28, 2007 10:48 pm

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Postby coomoob » Sat Dec 29, 2007 6:58 am

Bob,

I was glad to hear that there were no lesions on my spine...the less, the better is good news as far as I'm concerned. :wink:

As far as prayer...I was asking for strength to do whatever I needed to do. That's mainly what I prayed for. I knew something was wrong...but I needed help....mental help if you want me to be specific....especially after the MS news. I prayed for strength to make it through the LP. I try to talk to God on a (semi)daily basis - again, but far from Bible thumping religious.
_____________________

*More good news - I should be discharged today. My facial tingling and drooping have pretty much eased up. The area around the left side of my lip is still slightly drooped, which is hard to see but I can feel when talking. My left arm has partially returned to normal, although my left hand still has decreased sensation.

[/quote]
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