Going in for a spinal tap..nervous

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Regular Member

Date Joined Apr 2007
Total Posts : 134
   Posted 9/1/2007 9:46 PM (GMT -6)   
Hi everyone-
So I'm a Crohn's disease patient, but as of late, the concern has shifted towards a possible side effect I could have gotten from Remicade. I have to go in for a spinal tap next week, and I'm freaking out. I've had a ton of tests in my lifetime, but the idea of someone sticking a needle into my spine is really keeping me up at night.
Here are my symptoms so far...perhaps this will be enough for them to decide if I've developed MS or not..??
Started off with extreme facial and jaw pain, skin sensitivity all over my face. My face is also pretty swollen. It then moved into my legs...about 3-5 times an hour I get very sharp pains in my calves, but overall they feel extremely weak. I can walk about 10 steps and then suddenly feel like I have nothing left. Lots of headaches, but no fevers.
My neck is really stiff. I wake up during the middle of the night with terrible stiff necks that last for a few days. My right arm feels dead sometimes. Occassional tingling, but mostly just like its dead weight..I wouldn't say its numb tho.
My legs also feel like they are going to fall asleep...but they never do. I just get the tingle sensation for about a minute or so then it passes.
I have to go to the bathroom a lot but not a lot comes out. Mentally, I feel very weird. Probably due to all the stress surrounding my health, but I'm on the verge of tears throughout the day and finally at night in social situations something bothers me and I run home from parties crying. This is becoming a bad habit.
Anyhow, are there any other tests they can do to decide if I have this or not? I really really don't feel like getting a spinal tap while I'm at school. I think I'd rather go in for another colonoscopy.

Regular Member

Date Joined Jan 2007
Total Posts : 97
   Posted 9/1/2007 10:57 PM (GMT -6)   
I totally relate with your fear!! I was terrified to have my spinal tap done too. I had it back in January just after the holidays. I had a crippling fear of needles and my doctor says she wants to stick a big one in my spine? No Thanks!!! I freaked out for weeks and lost all kinds of sleep.

But it actually turned out to be NOTHING!! It was very quick and I didn't feel a thing. My doctor numbed me up really good...I felt the teeny little pokes from that needle but I've taken off band-aids that hurt worse. Then 5 minutes later she says "okay I'm in....we're almost done". I'm going "huh??" I didn't even know she had done anything....didn't feel a thing. The hardest part of the whole thing was trying to hold still....because I was laughing. Laughing! I felt so silly for freaking out and I just couldn't believe how fast and easy it was.

The procedure sounds so awful, but rest assured it really wasn't a big deal at all. Maybe ask your doctor if you can bring some headphones to listen to...I did and that really helped distract me (Harry Potter on audiobook) and bring someone for moral support. If you doctor is willing (and if you want to) ask if you can get a valium before your appointment. I hope this has helped ease some of your fears. It will be over so fast...it's just a short time that will, hopefully, bring you closer to some answers.

As far as other tests for MS....has your doctor done an MRI?

Good luck. Let me know if I can be of any further help.

Post Edited (littlechina) : 9/1/2007 10:02:39 PM (GMT-6)

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 9/2/2007 5:59 AM (GMT -6)   

Little China pretty well described my experience with spinal taps too (i've had 3, for various reasons).  A bit of discomfort, no real pain, no after effects other than a bit of a sore back the next day after the third one.

Your symptoms aren't real typical of MS, but a spinal tap can tell a doctor a lot more than just whether you have MS or not.  I suspect he's looking for all possible causes of your symptoms, and the results of the spinal tap might be able to help him focus on what is going on with you.

It is scary to be sure..but then, so are most procedures and things we have to do that we're not familiar with.  Asking for a valium beforehand is a good idea, and be sure to tell the doctor about your anxiety and crying, as that might be a clue as to what is going on with you do. A lot of metabolic problems can cause problems with emotions, too...after all, everything in the body is connected.

Take care, and let us know how it goes.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Regular Member

Date Joined Jan 2007
Total Posts : 97
   Posted 9/2/2007 9:58 AM (GMT -6)   
I did a ton of research and talked to my doctor about the fluid leak thing.....it's not very common, though it does happen. Everything I read said that the best way to avoid it, like Gramps said, is to come home and lay flat on your back for about 8 hours after the procedure. My doc said that she didn't know if this really made a difference or not (I guess the research is back and forth on this one).....but hey it can't hurt...I got to watch movies and have my husband bring me lunch and dinner in bed. I could live with that! Just make sure you have some entertainment.

The idea of the fluid leak scared the crap out of me, but again it's not very common. Try not to worry about the "what if". Just come home and rest. If something happens, you'll deal with it then. But chances are it won't. It will be okay!

Regular Member

Date Joined Apr 2006
Total Posts : 136
   Posted 9/3/2007 8:13 AM (GMT -6)   
  Hi CBK:  Hope you don't mind if I weigh in. I remember the doc and nurses had me stay lying down from the time the procedure was started (that goes without saying) and then flat on my back without raising my head for at least an hour after the procedure to avoid leaks and to avoid that terrible headache. That means stay lying flat on your back without too much movement and not moving from the surface on which the procedure was performed for that hour. When you go home you must lie down for the rest of the day or at the least 8 hours. If you have little ones at home perhaps you can get someone to help you for the day. Think it as a holiday after you get home. Read, watch TV, enjoy a few tunes. The people at this forum are very supportive and have given you great advice. You should have no problem and the biggest problem is the fear we all can have when someone is dealing with our spinal cord. I can speak for myself only, but I had no pain but did have pressure discomfort when the procedure was being done. Nothing serious. They are getting better and better with this procedure. Let us know how it works out and how you are feeling.  Dale tongue

New Member

Date Joined Sep 2007
Total Posts : 1
   Posted 9/10/2007 1:56 PM (GMT -6)   

Hi there. I had an LP last September. I was camping and developed a headache along with a bad stiff neck. I let it ride for a about a week, then I decided to go to the ER. I guess those two symptoms together can mean lyme disease/mengititus. Besides, I was paranoid before I arrived at the hospital (from googling symptoms) I was convinced I had one of these. They did a CT scan of my head, Bloodwork, Urine work, EKG's etc. Everything came back normal. My symptoms didn't go away, in fact they started getting worse so I was freaking out. I demanded an answer. I kept going back and they kept throwing me out. Well, I went there one last time and talked to the doctor. He told me the only way they could rule out any of these illnesses 100% is by a spinal tap (LP). You guys I am the biggest wuss on this planet, I have phobias of needles etc. I was just sooo upset and needed to be sure. I did it.


Im not going to lie it hurt a little bit. Mostly an uncomfortable pinch for about 3 minutes. I had nurses in there holding my hand. Its mostly scary thinking about it then actually having it. NOW VERY IMPORTANT!!!!....GET A PATCH IMMEDIATELY AFTER THE LP.


Like many others, I developed the worst headache in my life. The worst pain in my life. It was debilitating. The only relief was when I was laying down. The reason for this is the carbon dioxide levels in your brain are unbalanced due to missing spinal fluid. When your laying down, theres no pressure. I was at a point where I was crawling around my house for 3 weeks wanting to kill myself.

Im not trying to be negative here, you need to know the facts. The funny thing is...everything came back normal. I was diagnosed with stress. Can you believe that? So after all that BS/symptoms I was experiencing, it was nothing. I was in worse shape after all the testing, then previously going in.

On a positive note, my headaches did eventually go away. (3 weeks) They would not prescribe me any barbituates for the pain. They only gave me Reglan. So best of luck going in, just talk to ur doctor and see if you can get the patch right after its done. Hopefully u can!

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 9/10/2007 3:36 PM (GMT -6)   
No, the real fact is -- they won't just "give" you a patch unless you NEED the patch. And many folks don't.

I'm really sorry you had such an awful problem. Once you got the headache, did you go for the patch? In most cases the patient has immediate relief..at least within 30 minutes or so (not 3 weeks!), so I'm assuming you didn't.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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