coping

...and two steps back

2008-05-28T09:41:00.001-07:00

I haven’t updated for a bit because I had started to feel better. Pretty much normal (whatever that is), at least for me.

Today I’m not feeling so good.

A couple of days ago I started having problems with my right leg. I’m not entirely certain how to describe it. There was some pain, but not bad. It didn’t feel weak exactly, but it seemed to take a lot more effort to get it to do what I wanted. I guess one would call that “weak”, but again, that doesn’t seem quite right.

Today I’ve started feeling a bit fuzzy in the head and numb again. The finger tips of both hands feel numb, as do my cheeks. As before, not completely numb, but the sensation is slightly dulled. I’m not having any problems thinking, but speaking is a monumental effort. I’m hoping that some of this is simply me being over tired – I haven’t slept well in the past few days.

Hoping, but not counting on.

I have to admit to being scared right now. I was hoping that the fact that it went away was a sign that it was not serious. That it came back diminishes that hope.

My appointment with the neurologist is in five days. In a way, it might be better that I’m not feeling well when I see him.

My arms are starting to feel weak now, as I type this.

It’s more than a bit disheartening to feel pretty good for two weeks and then to go back to feeling bad.

Bad days and good days

2008-05-15T07:29:00.000-07:00

Yesterday was a bad day. My head was pounding to the point it felt like it was going to split open. My chest hurt, my fingers were tingly and burning, and it felt like my left leg wasn’t going to hold me up.

I managed to get through the day, though. We went home and I promptly fell asleep. I woke up long enough to take my drugs and fell asleep again, though not comfortably.

First I woke up with sleep paralysis and hypnagogic hallucinations (this is something that has happened to me every few months or so, for many years now). I couldn’t move for what seemed like a very long time (I’m sure it was just seconds in reality), then I thought I was sitting up in bed screaming while Liz just looked at me blankly. Then I finally did manage to snap out of it entirely and I think I actually did start screaming. Liz woke up and rolled over and snuggled me, which made me feel better. I don’t know what I’d do without her.

The problem is, once I start having sleep paralysis, the only way I can stop from slipping into it again is to wake myself up entirely, then go back to sleep. So I forced myself awake for a while. I’m not sure how long it took, but it was a while before I fell asleep again.

Some time after that, I awoke with Nibbler settling down on me. On my face. I was on my right side and he stretched out across my jaw, cheek and mouth. The funny thing was he’s so small and light that it didn’t bother me, so I left him there. He hopped down eventually.
I slept fitfully until my alarm started going off. I still felt bad until sometime after I got to work.

At the moment I’m actually feeling a tiny bit better. I still feel extremely fatigued and tired, and my left side is still weak and tingly and slightly numb, but my head doesn’t hurt. It still feels fuzzy. In fact, the best way I can describe how my head feels right now is that I feel almost like I’m buzzed. I’m not sure where that could be coming from. The only drug I’ve had today is a steroid.

A couple of days ago I got a call from the neurologist. They can get me in … in eight weeks. I don’t think I can wait that long. I took the appointment then immediately called my family doctor’s referral line and told them what was up. Yesterday morning they called me back and they’ve got me an appointment with a different neurologist, in less than three weeks. I wish it were sooner, but that’s much better than eight.

The good news is that when I came in this morning I had an email from HR saying I was officially accepted for the job (the same job I’ve been doing as a temp for almost six months) and will become a permanent employee effective May 27. I’m happy about that.

Outlook

2008-05-13T08:22:00.001-07:00

I did a bit of research yesterday. Apparently one of the drugs used to treat MS is called Betaseron. It’s taken by injection, at home, every other day. That sounds like a blast.

I admit I’m making an assumption here. I don’t have a diagnosis yet. I haven’t even seen the neurologist yet. This could be many things other than MS. But as I like to say, “hope for the best, prepare for the worst.” And MS is about as bad as this could be. To be fair, though, that philosophy may just be my own rationalization for being a pessimist.

Regardless, I’ve decided to do as much research as I can on MS. As it turns out, my prognosis (assuming that’s what this is, of course) would most likely be pretty good. More than 50% of people diagnosed with MS have what is called a Relapsing-Remitting Course. This means periods of attacks (relapses) followed by long normal periods (remissions). Most people with MS have normal life spans. Few become permanently physically disabled. Treatments are effective at this time, though there is no cure.

Right now two things bother me most (as far as symptoms go). First is the fatigue. I feel worn out by the time I get to work in the morning. I have to run around a bit this morning, coming to work then going back out to take a drug screening as part of pre-employment (I’m transitioning from a temp to a full employee here), then coming back to work. I feel like I need to sleep for a week.
Second, and even more troubling, are the mental issues I’ve been having. I take Ambien at night for unrelated sleep problems. The thing about Ambien is that it doesn’t make you sleepy, like most sleep aids, but instead it just quiets the brain down. After I take it, as it’s starting to kick in, I go through a period where my brain seems to be disconnected from my mouth. I can think clearly and even write, but getting my thoughts out verbally is difficult and taxing. That’s how I feel right now, only without the Ambien. Add to that the fact that trying to concentrate on anything is very hard. It’s more than a bit disconcerting.

I think that’s what scares me the most – the idea that my brain might stop working properly. My brain and all the little quirks it has and the weird (usually in a good way) way that it works – that’s what makes me me. If that changes, then who am I?

Most of my face is dull now, along with the usual suspects (my left arm and leg and hand). I also think that maybe my sense of taste has become a bit less acute. I ate some potato chips yesterday; some Pringles Sour Cream and Onion, and I didn’t taste much except some vague saltiness.

There was something else I wanted to talk about but now I can’t remember…

Random thoughts

2008-05-12T06:16:00.000-07:00

At this point, I would just like a diagnosis. Another possibility that my family doctor gave me was a mini-stroke. Apparently the infarctions show up on an MRI in the same way that the demylination does.

There are some other possibilities as well. I'm waiting now for my neurologist referral, which the doctor said could take up to six weeks (to get in, not the referral itself).

I'm at work this morning. I don't have any work to actually do at the moment. I could manufacture some for myself (not just busy work, but I could come up with something productive) or request more work (which is what I should do), but I can't bear the thought of making even that little effort at the moment. Event writing this blog is fatiguing.

My stepson, Nicholas, came to visit his mother and I this weekend. He's five. I enjoy his visits, but I wasn't able to engage him as much as I like to.

I worry about the strain that this is putting on my wife, Liz. She has her own health issues to worry about, without adding this to it. In some ways, I feel like she's more stressed about this than I am. I think I can understand that. I know if the roles were reversed, I'd probably be more upset than she was. Luckily she has quite a number of people she can talk to and lean on, both online and out in the Real World™. Still - we've only been married a month (today, in fact) and it's so much to ask her to deal with. But she hasn't once gotten annoyed or frustrated with me over this. She says I'm stuck with her forever, no matter what.

At this exact moment, I'm feeling numb in my left cheek and my entire forehead, my left shoulder and thigh and the fingers on my left hand. There's also a bit of numbness inside my mouth on the left. It's not an entirely numb feeling - more like slightly dulled. I can still feel, but the sensations are not as intense as they should be, and there's a slight tingling in those areas, as well. It's worrying because this sensation seems to be spreading, across the forehead and into my mouth.

More worrying to me, though, is that my brain is getting a bit cloudy at times. Friday I had a moment of confusion and couldn't remember where my cubicle was. It was only a moment and it passed quickly, but it was still scary. Who knows? Maybe it was just one of those normal forgetful moments we all have. But for me, now, any time I get slightly confused or muddled it feels like the beginning of the end. It scares me.

Just watch - this will all probably turn out to be nothing in the end, and I'll have wasted all this perfectly good worrying for nothing.

No news is...

2008-05-09T09:07:00.000-07:00

I had a follow up appointment with my family doctor this morning.

We went over the MRI results, and he told me basically the same things that the ER doctor did. The most common cause of these symptoms is MS, but that I wasn't a highly likely candidate for it. There are several other things that could be causing my overall symptoms, including migraines.

The important thing is that none of this is life threatening. At the absolute worst, whatever it is should be treatable, if not curable. So that's some comfort there.

The bad thing is, it may take six weeks to get in to see the neurologist. I was hoping it would be faster than that. The doctor is going to try to push it through sooner, but it didn't sound likely.

So now I have some antibiotics, some migraine pills, and something that treats the neurological symptoms.

Yesterday I started getting some weakness in my left leg. "Weakness" might not be the best word for it. I like to call it "rubbery" - the same sort of feeling that you get after running for a while. I don't feel like I'm going to fall over or anything like that (at least not from the leg - I do feel very fatigued, though), but it just doesn't feel right.

I can't decide if the visit with the doctor made me feel better or worse. A bit better, since we've moved a bit in the "not MS" direction, but a bit worse, since we've moved a bit away from a definite diagnosis.

The symptoms have come on so suddenly that I think I'd rather have a definite diagnosis.

The beginning?

2008-05-08T06:49:00.000-07:00

I'm not really sure where to start. I'm not even sure if this is the start of something. It could be nothing. But I felt the urge to get my thoughts and feelings onto "paper" as I go. For what reason, I am not sure. Maybe to help me to get my thoughts in order. Maybe so that someday I can look back at this and laugh at how worried I was at what turned out to be nothing. Maybe so someone else can read this someday and realize that others have gone through the same thing.

But for whatever reason, and whatever this all turns out to be, I am here.

It is Thursday morning, May 8, 2008.

Six days ago, on Friday, I passed out.

My wife, Liz, and I had stayed at my parents' house the night before. I woke up early that morning, maybe around 5, with a headache of epic proportions. I laid there for a while, hoping it would go away, but with no luck.

Around 6:30 I got up and immediately regretted it. I went all light-headed and dizzy, and felt violently sick to my stomach. Ignoring it all (or at least trying) I got dressed. I went into the bathroom to start cleaning up for the work day...

...and then there were half a dozen EMTs standing over me. One was roughly rubbing his knuckles on my breast bone, testing my pain response (I still have the bruises from that!) and another was waving an ammonia capsule under my nose. I came around, sort of. I was still feeling pretty out of it, but they managed to walk me to their rig. It also turned out that I'd whacked my head a good one on either the toilet or shower as I fell. One stuck an IV in my hand and we were off to the hospital. Fortunately my parents live less than a mile from the nearest one, so it didn't take long at all.

An assortment of drugs were pushed into my IV and I was sent for a head CT, which came back normal. Blood was drawn, and all those tests came back normal. Another drug was pushed into my IV, and I was out for a few hours. They sent me home with an order to follow up with my family doctor. I was still dopey from the drugs when we got back to my parents' place, and I ended up sleeping most of the rest of the day.

Over the weekend I felt a bit better, though not great. Liz and I even went to the local Petsmart (a nearby animal shelter was having an event there and we ended up putting in an application for a kitten - like we need another one - which we are picking up this evening).

Monday rolled around and I started feeling a bit bad again. It got worse as the day went - lots of severe, stabbing pain behind the left eye. The dizziness wasn't as bad and the nausea was almost non-existent. I decided to let it go, since I had an appointment with my doctor the next day.

Tuesday was pretty much the same. I went to the doctor. He reviewed my results from the ER's tests and checked me out. He diagnosed a spasm of the muscle behind the left eye and prescribed some muscle relaxants. But just to be safe, he scheduled me for an MRI and an appointment with a neurologist. That all seemed reasonable to me, so I went home and rested the rest of the day.

On Wednesday I went to work feeling not too bad, but late in the morning the pain returned with some new, disturbing symptoms. I had some numbness on the left side of my face, my left shoulder, and left hand. It was difficult to type. I finally told my boss I needed to go. I talked to Liz and we decided to go back to the ER.

But as we drove we second-guessed ourselves and decided that I just needed rest and instead of going back to the ER, I went back to my parents' place (dad was there) and Liz went back to work.

Again, I slept for a good chunk of the afternoon, but when I work up there was no change in my symptoms - still slightly numb and tingly.

In the meantime, Liz had been talking with one of our friends who is in medical school. He prodded her into taking me to the ER, and I agreed.

So she came and got me and back off to the ER we went.

The place was packed. This ER in particular is usually very busy, but last night seemed even more so. After signing in we sat and waited to see the triage nurse. Half an hour later I told Liz that I was fine and maybe we should just go home. She talked me in to giving them an hour to see the nurse, and then we'd go and rest.

About five minutes later they called me. The nurse did the usual - blood pressure, temperature, pulse (I do have one), etc., and then settled into asking me some questions. We went through them quickly (I have, unfortunately, had much experience with ER visits), and then she started asking me to do some simple tasks - things like holding both hands in front of me, palms up, and closing my eyes. This one she repeated three times, then told me to have a seat and they'd call me soon.

No sooner had I left her station when she called me back and asked me to do the test again. I asked Liz about this later and it turned out that, unknown to me, my left arm was drifting slightly and shaking.

Again, the nurse told me to have a seat and they'd get to me soon.

Soon, even with as many people were there, was about five minutes later. And they didn't take me back through the normal route, but through a door at the back of the triage nurse's area, which lead right into an ER exam area.

Now I was worried.

A few minutes later I was moved to another exam area, and donned the obligatory, highly fashionable, green and white gown. At least it was a new one, so I guess that's something.

No sooner had I laid down than the registration person showed up. But before she could ask me anything, the nurse was in checking vitals and getting my story again. She left and the registration woman came back, and got me fully checked in. The doctor was in a very short time after that (another worrying thing, that the doctor himself saw me so quickly) and decided to order another CT. He said that a hematoma could sometimes not show up immediately and he wanted to make sure that looked okay.

So off to the CT I went. I got onto the table, positioned, and ... waited.

And waited.

I laid there for five minutes and nothing happened. I had been pretty out of it for my last CT, but I was fairly certain that the machine made noise.

The tech who had brought me in came out and apologized. Apparently, just as they'd been getting ready to start, they'd gotten a notice that the doctor had canceled my CT and wanted an MRI instead.

Oh boy.

When my family doctor had said he wanted me to go for an MRI, I had emphasized that I wanted an Open MRI. I'm a fairly large guy and, even though it was more than ten years since my last MRI, I still remembered how panic-inducingly cramped the machine was.

The doctor came in only a minute later and we talked about the MRI. He ordered an IV sedative for me and I finally relented.

The nurse came in and stuck the IV in, and the transport person came to ask me some preliminary questions before the MRI. I took off all the metal I had, which was my watch, my wedding band, and a ring that Liz gave me that I wear on a cord around my neck. I had Liz hold them.

Liz and I have been married only since April 12, less than a month at this point. I can't say that I never take off my band - I still find it distracting when I try to sleep - but all the same it felt a bit ominous to be taking off these symbols she had given me (the ring around my neck was her grandmother's wedding band, and it was what she gave me as a symbol of our engagement).

A minute later I was being wheeled to the other side of the hospital to where the MRI was. The two techs there explained what was going on, helped me put in some ear plugs, and rolled me into the machine.

Twenty minutes of loud banging later, they took me out and helped me back onto my bed, and I was back off to my ER room.

The sedative never did kick in.

Again, it was a short wait for the doctor.

So, if you've read this far and wondering just what the hell I'm going on about, here it is.

The doctor said that the MRI showed several tiny infarctions, and - more worryingly - some demylination.

Demylination is when the sheaths around the neurons are damaged. This is not a disease or condition in itself, but a symptom of several other possible conditions.

The most common one is Multiple Sclerosis.

It is possible that I have Multiple Sclerosis.

I'm waiting to hear back from my family doctor about the neurologist referral. That's the next step. I called my doctor's office this morning and made sure that the referral was coming through, and soon. They're supposed to call me back today.

We'll have to wait and see.