Needed to talk

[mommyRN]

I feel like I've been doing a pretty good job keeping it together over the past several months. With all the doctor appointments, symptoms, and unknowns I could be driving myself and my family nuts!

Today is not quite so good. I have my LP tomorrow and I'm getting nervous. Not necessarily nervous about the procedure (although it's a bit scary) but the results.

No matter what the LP shows, it's not good. If it's clean, we still don't know what is going on with me and there's not much left to test! If they find something, it's likely not a good thing either.

As much as I don't want any disease or disorder, I want to put a name on whatever it is and get whatever meds and treatment I need so I can begin to move forward.

I'm sure many of you have felt or feel the same way, so I know I'm not in a unique position. That's why I'm putting my thoughts down here where people understand. Thanks for listening.

PS- If anyone has some great hints to help avoid the post-LP headache let me know!

[hflietner]

Just take a deep breath....and remember that you have no control over the results. None! Zippo!

To bad it wasn't that easy!

I will keep you in my prayers tonight. If it helps at all, when you need it the most, close your eyes, take a deep breath, and know that you have a very large group of supporters behind you.

I wish you luck, and more luck, and what is meant to happen will and please trust that you are where you are suppose to be in your life. That is what gets me through the non-answers.

[klmc0616]

I had to have 2 LPs. The first one was slightly uncomfortable, but otherwise fine. They had me lay down on the table, kind of in the fedal position. My second was done under my second neuro (who was a jerk and diagnosed me incorrectly with the wrong kind of MS) and this LP was bad. I was suspicious from the beginning, though. They had me sitting up, just slightly hunched over. It felt much worse than the first and I'm nearly certain it was due to the position they had me do the test in. Unfortunately, I ended up with a spinal headache for a month and had to have two blood patches.

My experience seems to be uncommon, but it seems to make more sense to me to be laying down when they do the test...less pressure, I think. I hope yours goes well. I completely understand your frustration, it took them over a year of ruling everything else out before they diagnosed me (at 20) with primary progressive MS for which I was treated as a guinea pig. It wasn't until at least another year later that an amazing neuro diagnosed me correctly with RRMS and I was finally put on a disease modifying drug.

Hope all goes well and keep your chin up! You are definitely not alone in this grueling process. Good luck!

[techie]

acuo of coffee

That's what the Dr. suggested I drink afterwards also to lay down or recline for 6 hours.
I didn't get any kind of a head ache.
techie

[klmc0616]

I had to have 2 LPs. The first one was slightly uncomfortable, but otherwise fine. They had me lay down on the table, kind of in the fetal position. My second was done under my second neuro (who was a jerk and diagnosed me incorrectly with the wrong kind of MS) and this LP was bad. I was suspicious from the beginning, though. They had me sitting up, just slightly hunched over. It felt much worse than the first and I'm nearly certain it was due to the position they had me do the test in. Unfortunately, I ended up with a spinal headache for a month and had to have two blood patches.

My experience seems to be uncommon, but it seems to make more sense to me to be laying down when they do the test...less pressure, I think. I hope yours goes well. I completely understand your frustration, it took them over a year of ruling everything else out before they diagnosed me (at 20) with primary progressive MS for which I was treated as a guinea pig. It wasn't until at least another year later that an amazing neuro diagnosed me correctly with RRMS and I was finally put on a disease modifying drug.

Hope all goes well and keep your chin up! You are definitely not alone in this grueling process. Good luck!

[KatieDidNOT]

Yes, I understand your anxiety.

I had 2 LPs as well. And I will be honest, I did not like them one bit. One was 5-years ago, the other 10-years. I have read through these boards that they have gotten much better. So that is good news.

I always told the neuro in advance that I was pain intolerant and got double the local anesthetic.

I did get a spinal headache on my second LP. I had to go to the emergency room for a blood patch, and the headache went away instantly. Some of the neuros do a blood patch with everyone, some don't. So ask tomorrow if they will do one.

If they don't, whatever you do, don't take aspirin or anything that will thin the blood. If you take aspirin, they can not do a blood patch and you will be placed in a back brace...same effect but it has to stay on for a few days.

If you get a headache go to the ER...it is an easy fix. Don't wait and think it will go away, because most likely....it won't.

Best of luck to you tomorrow, I would tell you not to worry but you will anyways. But I can guarantee you will be happy once it is over.

--Katie

[KatieDidNOT]

Ooops...just read you are a nurse. Please disregard my previous post. You would know about that stuff better than I.

Cheers--Katie

[FL_Jhawk]

I was told to lie flat on my back for, I think, 3 hours. No pillow, no nothing - just lie flat. I did as they said and had no headache at all.

I understand there is an LP technique that causes little pain now. Forget what they call it - you can do a search on spinal taps here. Even though I was in a hospital, I got the old fashioned method and, well, for a second or two as they puncture your spinal cord, it is a quite unpleasant feeling. As soon as they stop pushing the needle, the pain goes away totally. Unfortunately for me, the first puncture wasn't producing any fluid, so they had to do it again!

Good luck!
Jeff

[gomer]

Mine was done in a VA hospital w/fluoroscope as I retested.

They had to out me under general to get er done. I had no headache or other problems at all. Although I already had my RRMS from clinical Hx and MRIs (a spine lesions or two and many brain lesions) Dx before the LP, it did help double seal the DX. Once you have had a positive LP I doubt you would ever need to go through it again.

Good luck........

Gomer

[Just MS me]

I was keep in the hospital all day and sleep most of it and I had only slight headach.

[mommyRN]

@katiedidnot-
Thanks for the great information, nurse or not I don't know much about LP. I'm a psychiatric nurse The people on the site are the experienced ones, not me, and I am learning so much!

[mommyRN]

Thanks all for the advice and support. Hopefully by this time tomorrow I'll be all better

[cranberrysauce]

My neuro prescribed me a few pills of a common migraine drug to take the headache edge off.

Lay down, drink water and drink CAFFEINE!!! I'm not sure this is 100% proven clinically but it certainly made me feel better.

Good news was the headache went away mostly when I'd lay down so just take it easy and you'll be great!!!