Lumbar punctures hurt

In case you were wondering.



Anyone who tells you that they are no big deal are big, huge, enormous, dirty, rotten, liars.



To backtrack a little, my husband has learned something about me through all of this. I will say that things are no big deal and then resent the fact that he is not there to hold my hand.


When I originally went to the emergency room about five or six weeks ago, I firmly told him that I was fine. And then felt put upon that he had not shown up anyway. Now, to be fair, when I say that I am fine, at that moment, I generally mean it. It is later that I realize that I really wanted the help.

So when I went to the neurologist, I told him, and meant it, that he did not have to come, but I admitted that I needed hand holding for the lumbar puncture. That morning, I told him that he didn't have to come, and he wisely ignored me. He took the afternoon off and we drove out to the office. In order to be efficient, we get there a little early and I get five more vials of blood drawn and an x-ray. We go upstairs to get the LP (that is a lumbar puncture for the uninitiated).

I don't know why I didn't know that the neurologist was the person to do the procedure, but I wasn't aware of that. It had come to me, slowly, over the past week that someone was going to stick a real needle in my real spine. I was not looking forward to it. I was trying hard to not be scared. My goal was to not make an utter spectacle of myself.

I asked him if he had received the notes from Dr. P and if he had seen all of the images on the MRA. No to the first, and yes to the second. He had seen my arteries and saw nothing wrong.

So, just to be clear, you think that my arteries are completely normal? Yes, he says.

Great. now I need a third opinion. One of my neurologists is not very competent I fear. Please let it not be the one who is going to stick a needle in my back and risk paralysis and brain herniation.

Your brain can herniate during a spinal tap. Just so you know. It is very rare and they monitor your spinal fluid pressure, but your brain can get sucked downward. I think it is fatal.

So, the neurologist and the medical student who is going to observe leave the room and I get dressed in the backless gown. I elect to leave on my underwear, but if I had been thinking about it, I probably would not have worn the bright green undies. At least they were clean.

I get draped and betadined and it is explained to me that they will numb the area first.

You know how when you get dental work done how the novocaine injection is painful all by itself? The same was true for the lidocaine, too. I curled up into a little ball and they injected the painkiller. I would like to say that the idea was worse than the test, but I think I would be lying. My sympathetic nervous system kicked in and I sweated so heavily that I thought that I was going to slip right off of the table. I finally had to ask my husband to put his hand under my feet to keep my legs from slipping apart. My nervous system was not fooled by the lidocaine.

This is what the procedure looks like.

But more creepy.


Anyway. I got through it all right and an eternity and four vials of CSF later, we are done. After each vial is filled, I can feel the slight jerk as it is removed and can hear it being capped.
What is funny is that we are handed the bag with the vials, just like it was a Happy Meal and were told to take it downstairs to the lab. The physician handed me the bag with the vials of precious CSF and I promptly dropped it. Because I have been dropping things a lot.

I looked at my husband and he looked genuinely horror-struck. I don't think I have ever seen that look on his face before, but now I know what expression he will have if one of my limbs drop off or something. I think that he thought that they had shattered. However, the vials are made of plastic and no harm was done.

The CSF is crystal clear and surprisingly pretty. It looks like water. I had thought it would be cloudy, but it isn't I get one more blood draw down stairs and we are done for the day.

We stop and have delicious fish tacos at the place where I used eat when I was a graduate student. I am laying as flat as I can, because my sister has admonished me to stay flat. Both of them have called to see how I am. I don't have a headache, but I am thirsty, but I think that is psychosomatic.

So, that was last week. I am now all caught up to real time. Tomorrow I get my last tests, the MRI and MRA. My back is still sore from the LP, but now it just feels bruised. It hurt for longer than I would think, given the fact that it is just a little puncture. The neurologist told me I could go right back to work but to avoid heavy lifting.

I was in Wal-Mart two nights later, bent over, lifting a 12 pack of Diet Dr. Pepper, and I had an image of my back springing a leak like a garden hose. I unobtrusively felt my back, but it was dry.

I am in a lull right now. My symptoms are pretty much gone, which the neurologist would say is consistent with MS -- symptoms for about a month, and remittance.

If this is as bad as it gets, I think I will be fine. I am tired, but maybe the physician will put me on speed or something and I will lose weight and be more peppy!

A girl can dream.

Quick, before I forget ...

Okay, so I spent a long week and a half, waiting for my next appointment. I faithfully took my aspirin and tried not to think of the fact that my cerebral artery was slumping over. Decreasing blood flow to my brain. Causing brain damage. Irreversible brain damage.

Well, I didn't do so well, as you can probably guess. I worried that if I bent my neck the wrong way that my head would explode.

It didn't. And, yes, I know that this not the right "exploding head" image, but I love Heroes.

The good thing is that my husband took me away for a weekend for my birthday and got me a camera. I will put up some of my favorite shots on SA in a couple of days.

The bad thing is that I was a bit tired and woozy. And, let me just say, the whole "keep your heart rate down" thing is putting an extreme crimp in my style, man. A romantic weekend is certainly difficult when you are worried about your pulse.

But we had a lovely time. Except for Sunday morning when I could not speak. That was a bit unpleasant and I think I lost it a little. Good thing that I am weak, because hitting the door was more sound and fury than actual damage. As we left the hotel, I noticed that my leg and arm were swollen, and I was feeling distinctly uncomfortable, because edema is generally a bad thing.

I deleted this blog, because I could not have a blog called MS Behavering if I did not have MS. I enlisted all of my friends and family to help me rename it but they were a sad disappointment, I have to say. Not a funny name in the bunch, but I admit that "lesion" is difficult to pun.

As we are driving, I tell my husband that I think that I have a wrist watch that measures you heart rate, back from the time when I thought I was going to do interval training. Actually, I want to tell him that I have a wrist watch, but I can't get the word out. I can't say wristwatch.

Intrigued, my husband tries to see if he can get me to say the word in another way. He points to his wrist and asks what that is called. I say arm. He asks me "what do you do when with a television?" I say, "you look at it." I can't say the words wrist or watch.

That was the day that I could feel the numbness going all around my entire left side. My ear went numb, my lips, forehead, back of the neck, my whole side. It was weird. Having a numb eyelid is weird. My eye felt sticky. I ended up taking a valium because I was getting anxious and I did not want to have something like a stroke. My husband was already threatening to take me to the emergency room.

So, when I went to Neurologist number two, on Monday I was a bit discouraged. I sat in the office, surrounded by people who were pretty impaired. I supposed that I never really thought about it, but neurologists' offices are filled with people with strokes and traumatic brain injuries and advanced Parkinson's and Altzheimers.

There were a lot of pamphlets on MS, and I thought a little wistfully of the good old days when I thought that I had MS.

When I got weighed, I fell off the scale. Now, that was actually funny and made me feel better, for whatever reason. Neurologist number two, Dr. H, was younger and shorter than I expected. He took the CDs of my MRI and my MRA and left for about 15 minutes, as he could not upload them on the computer in the exam room.

When he came in, I went over the whole story, concluding with what Dr. P said about my cerebral artery and how she did not think that I have MS. At first, he did not seem to really get what I was saying, as he asked questions that I had already answered, but we persevered and seemed to get to the present.

So, I asked him. Did you see the MRA? Did you see the artery and how it is kinked?
Well, he said, I looked and it looked normal to me.
I stop and consider this information.
Did you look at all of the images?
I saw all five.
Did you click on them??
No.
Well, you have to click on them because the images are stacked and you will get different views.
Oh, he said. However, he said that he thought that it was more likely that I had MS, as the lesions were exactly where he would expect them to be if I had MS.

What about lupus? Well, he said, it doesn't look like the test for lupus was done.

Nine vials of blood? No lupus test? Are you sure?

So, he examines me and says that I definitely have expressive aphasia. Which means that I have trouble speaking. I knew that, but it is nice that he can see it. I am having some memory problems, which I also knew.

It is funny, but Dr. H is completely the opposite of Dr. P in terms of his approach. She said that the tests were pretty invasive and wanted to wait and see.

Dr. H says that he is going to pretty much test me for everything. He says that it will be a shame for me to have something that they can fix because they were not aggressive enough in looking for it.

So I will be getting more blood tests, for lupus, for Lyme's disease, and a host of obscure diseases. I am pretty sure that we don't have deer ticks, here, but I am not going to quibble. He wants an MRI of my brain and an MRA of my head and neck. And a chest x-ray.

Oh, and a lumbar puncture.

That's a spinal tap. That is how you know if you really have MS.



He schedules a lumbar puncture for me for the next week. I must have looked funny, because he reassured me, saying that it should be pretty easy. I am .... not obese (gee, thanks), in good health.

I am not reassured. I gave birth to an almost ten pound baby because I was scared of the epidural.

There is something seriously wrong with people sticking needles in your back and drawing out your cerebral-spinal fluid.

So, why am I blogging this again?

I was going to the bank today -- and I had a flashback to teaching experimental design and realized that I am trying to, sort of, do a case study -- to watch myself through this process and see how I come out on the other side. I would hope that someone else hears an echo of themselves in what is happening to me and is fractionally lighter for a moment, but that is a lofty goal, and one that I don't really expect to come to fruition.

Maybe I will use this to sharpen my writing, which is always good.

Surely part of it is to update people who are in the know so that I don't have to talk about what is happening to me medically, because it is a big, gargantuan bore.

Sssnnnoooorrrrre.

If I can borrow from a friend of mine, Shelley, I think it is all about the honesty. Maybe, just maybe, I can be honest about what it feels like to become a sick person, a patient. That is a good goal.

I think that I am blogging this because none of this is what I would expect. I have never thought that I would be sick, ever. Not really. And nothing about it is what I would have thought it to be. I am not what I thought I would be.

I am more scared than I thought I would be.
I am more petulant.
I am not brave.
I am graceless.

It is not that I am not receiving grace, because grace, surely, does abound. I just feel like I am not a beacon of light in all of this. I think I shine better as a well person than as a sick person. And that is a little embarrassing and makes me cringe a little.

One thing that I am not blogging for is for sympathy, because, believe you me, I need none. If I dropped dead tomorrow of some gruesome, painful disease, I would never be able to say that my life is anything but absolutely wonderful. So, please don't say that I am brave or strong, because I am not. I love the fact that some of you can come and contribute, because I truly love your voices.

I give you full permission to laugh at me -- because that is great. But sympathy? None needed.

I am not going to say that there are moments that have been difficult. Watching my poor husband deal with all of this has been no fun. Scaring my kids and making my sisters cry has not been fun. If it was just me, I think that this would be much easier.

However, I am in a lull right now. In between medical tests and medical appointments. I am going to get back and catch up to the present in the narrative.

Actually, if I was going to really be honest, I am blogging this, partly because I am scared that I will forget what this is like. And that whatever I am supposed to be learning will be forgotten. Because my memory is a little shot right now.

This is how I feel ... at least sometimes

Guess which one is me ... and which one is the aforementioned, unnamed condition?

Neurologist Number Two …

If you were a flavor of ice cream, what would it be?

Okay, so it's not exactly like the Dating Game, but seeing more than one physician is a little like that. It feels a little like being unfaithful. It would be easier if I did not like Dr. P, and I did.

Back when I was looking for a neurologist, any neurologist, I made an appointment with someone at Loma Linda and the appointment is about a week away.

Even though Dr. P and I both discussed the fact that I would see another physician because she was located so far away, I feel a little funny. I called her office and requested that the test results be sent to me, neglecting to mention that I was taking them to another physician – sort of implying that they were just for me, not that I was going to show them to anyone else.

I am not sure why it feels like I am cheating on my physician. I only met with her once. We both knew that it would end, no promises of fidelity were made. She knew I would see someone else – it was just a short-term thing.

I think it is because a relationship is forged when you start seeing a physician – however fleeting. They are important to you – you rely on them. The intake is a little like when you talk about your relationship history on the first date. There is a surprising desire to please. Do they like me? Do they get me? Will they take me seriously? Especially when there is such a weird set of symptoms – will they think that I am sick? Will they dismiss me?

I think that you just want to be important enough for them to pay attention to you.

It feels like dating because you don’t know if they like you as much as you like them. Are they as into you as you are into them. The fact is that it is a kind of one way relationship – there are more of us than there are of them … despite the fact that we pay their salary.

I need a second opinion, even if I am a nice patient

In the next week, I did as Dr. P suggested. I took my aspirin, but not the Valium. Over the next week, the dizziness went away completely. I would have moments when I would list unexpectedly, like a tree bending in the wind, but that was bearable. The speech was still pretty bad. Even the people at work were beginning to fill in the blanks when I could not get a word out. I took to touching my nose, like I was playing charades when someone got the right word. I was still dropping things and stumbling. The left side of my body ached and felt swollen, but I was no longer getting anything new, symptom-wise. I was getting used to coming home from work and going to bed.

Sort of.

A week after my blood draw, I got the news from Dr. P. All of the tests were normal, but she said that the marker for lupus was raised, slightly. It was out of the normal range, but not a lot -- based on that number alone, she was hesitant to diagnose me with lupus. She said it could be almost anything -- atypical MS, a brain infection, a different connective tissue disease ...

We had a nice chat about what I was supposed to do from here, and she basically said that I should not worry. I could taper off the valium over the next two weeks, if I wanted to. I confessed that I had not taken it at all. She laughed, but said that if I had taken it, I would not have been so anxious over the week. (I had called her office more than once, but the lab people had not sent the results and they needed to be asked to fax them over.) I told her that even if I did take the medicine, my mind would be anxious, even if my body was relaxed.

She gave me her cell-phone number and said I could call her at any time and to call immediately if I had any symptoms of lupus and she would start treatment right away. I told her thank you very much. She gave me the name of a physician in my area to call, saying that they had talked over lunch and that he would see me on an emergent basis, especially as I was a nice patient.

Oh! I said. Thanks!

She laughed and said that, although I was a nice person, what she meant was that I was a nice patient. Which is different. She meant that I was diagnosable. That I could be treated successfully.

Although only people who actually know me are reading this *waves* -- in case someone, somewhere ever does read this who does not know me, I work in a mental hospital.

One of my newer patients and I were talking the other day. He is relatively young, bright, articulate, a little manic (in the bipolar sense). We were talking about his behavior on the unit and he was saying that he was trying to be a good patient. In some ways, this is a good idea. A good patient is one that causes the staff no problems -- no demands, no headaches and basically takes any crap that is shoveled out to them.

But part of me really hates it that being invisible is considered to be a good thing -- that it is seen as progress to be passive and keep one's head down. So we discussed it, seeing the reality of the situation but also talking about whether that was a legitimate goal. So when I was deemed a nice patient, the reality of my situation hit me, yet again. If I have some chronic disease, I will be a patient.

Being a patient requires that you take on a certain set of characteristics -- being told what to do and following instructions. I am not really good at this. At all. I don't know how to be a good patient. I wonder how I am going to do at being a patient if I have a long-term condition.

This sux.

Finishing up with Neurologist Number One

(I am trying to get to the present as fast as I can)

Okay -- so I left Dr. P's office and drove home. By the time I got home, it was clear that my whole left side was numb. I broke down and looked up lupus on the Internez and found that it is a progressive auto-immune disease that attacks your organs and joints.

a note about looking up medical information on the internetz: it is both a blessing and a curse. when I read about the treatment for MS, I almost broke down in tears. It sounded rough. And I worried that I was giving myself symptoms when they kept appearing after I read about them. The only thing that reassured me was that I had blurred vision before I read about it. But I had to say, that when you compared lupus and MS, symptom for symptom, we did have a clear winner.

And Shelley, you are right, Seal (the singer, not the mammal) has lupus, which I did not know. I always thought that he had really bad acne as a teenager. Now I feel kind of bad. But I am kind of glad that I don't have a rash.

In fact, when looking over the lupus symptoms, I don't have any of them. Except dry skin and dry hair, but I am a middle aged woman living in the Southern California Desert. How would I know?

On that Friday, I went in for blood work and donated nine vials of blood. The phlebotomist kept commenting on how very many vials we are taking. I nod and hope that she will finish soon so I can get to work.

I call back the neurologist at the beginning of the week. I am feeling a little better, less room-spinny and have stopped retching when I walk more than 15 feet. I can't walk straight, and speaking is still difficult. I am still exhausted. At any given time, I feel like I could lay down on the floor and go to sleep. Now, my husband feels like this most of the time, from what I hear -- but me? I loathe naps. I don't get them -- I don't understand the need, and I find people who like naps to be baffling. I don't really even like sleeping, to be honest. I would rather read a book.

I keep calling my sister on thinly-veiled pretexts. I just want the contact. I text my husband, saying "hey", for no reason. Rowan emails me daily and I am grateful for the contact.

I am anxious, a little. And restless. And tired. I am starting to feel less numb.

The neurologist prescribed valium to even out my gait, but I don't take it, because she also said that I can't drive for two hours after the dose. Forget that! And also, as I said, the nausea had subsided to a great degree.

I was still dropping things, and stumbling. I was pretty forgetful. I took to carrying a steno book around with me at work, and writing down everything I need to do. Now, I should say that I have a really good memory. As my friend Kim said, I am not allowed to have memory problems, because I am her memory. The patients on my unit come to me and have me remind the psychiatrist what needs to be done. I am my husband's memory.

I went to the jail and did two evaluations, which is very common. When I got home to write them up, I literally could not remember one of them. Not at all. When I read my notes, nothing came to mind. It was awful. Where a memory should have been, there was a gaping void. When I tried to find some little thread to use to work my way back to the memory, nothing happened. It was weird, like feeling along a wall in the dark for a doorway and not finding it. But you know it's there. Ordinarily, I would think of the setting, and in remembering where I sat or what was happening, the memory would come back. This didn't. I started to get anxious, because a really basic skill was letting me down. It took about three days before I could retrieve the memory. Ack.

I got a hold of the neurologist at the end of the week, on Friday -- two days after seeing her. It had been a rough day -- my speech was really off. It was hard to articulate and I was having significant word finding difficulties. She said that the MRA had come in. She told me that three of my cerebral arteries were perfect, but that one of them was kinked, thereby interrupting the blood flow to my brain. This would explain the transient nature of the symptoms. She described the artery as "twisted".

Er. Okaaaaaayyy...

Exsqueeze me? What? I have a twisted cerebral artery? Kinked, even? Doesn't lack of blood kill off brain cells? (after all, I am a trained professional -- I know these things ...)

So, I ask her what does this mean? She says that it is most likely lupus and that she is waiting on the blood tests to confirm it. I am to keep my heart rate down ... no stressing out. No vigorous exercise, no exerting myself. My pulse is to stay under 94. The only treatment that is really possible is to take aspirin as a blood thinner. I am to increase my baby aspirin dose.

But, I say, feebly ... you can't just leave me like this ... can't you fix it or something? She says no, that it is brain surgery and you want to avoid that at pretty much all costs. What about a stent? (A little medical knowledge is a dangerous thing). She says that the artery is too convoluted for anything like that.

Oh.

Okay.

So now I have a cerebral artery that is sagging -- like almost everything else on me. I keep imagining putting a little cast on it, so that it can stand up straight.

Dr. P says that I am to relax and take it easy and to not stress about this. She is waiting on the blood tests to confirm lupus and those should be back in about a week.

Goody! Except for being afraid to move my head for fear of my cerebral artery exploding, I am just great.