Tuesday, July 31, 2007

Into the ER

The ER is my favorite place! LOL

Went through my history with the ER nurse, who was a little distracted and jumpy. It was hard to summarize things for her. I thought I might be having a bit of 'roid rage', alas, Kris said she was being a bit upity as well. Thanks hon, but if I had had some roid rage that would have been cool too! I could be a little more pushy during my hospital visits to make sure I'm getting all the care and assistance I need, I tend to be a little passive.

So, I got into the room and out of the general chaos that was the waiting room, my headache was only a 3-4 standing and 1-2 sitting. But, it was an 8 during breakfast and a 6 during the infusion. I was seeking long-term relief. The Dr. came in and described the routine. Since my headaches were not 9-10's and they were not continual since Firday; I was not a severe case. I had a spinal headache from the Lumbar Puncture. Which can be serious.

So, IV, saline drip followed by an anti-nausea medication, a souped up Ibuprofen and a big bag of caffeine administered through said IV! An EMT attempted my first, into a vein in my left hand, after basically missing, and then fiddling with it for a bit with the nurse they gave up. Ugh. The nurse came over to my right arm, which is historically better, and set up the needle and tube inside my vein in the blink of an eye. Yay.

I had a bit of a reaction to the anti-nausea; a flushed, feverish feeling in my face and shoulders. So, the nurse, who was a nice guy, added some perscription benadryl and I felt better shortly. I finished the caffeine and talked to the doc. In brief, he said that we were hopefully on the tail end of the spinal headache and this drug panel should be enough, in addition to some rest.

Well, since I'm hopped up on caffeine and watching the Red Sox I won't take up much more of our time here. I've got a prescription for Fioricet to take as needed, and some energy drinks. Phase 3 of the steroid infusion tomorrow and then, hopefully, a restful afternoon and evening down in the cape with all the kids in the family. And light at the end of the tunnel.

Steroid Infusion Day 2 of 5

After the lumbar puncture it was a long ride down to the Cape. I had a headache during much of the trip but didn't think much of it, especially since I've had migraines for 15 years. Unfortunately I had more headaches Sat. and Sun. but tried to take Advil to keep them at bay.

On Monday after driving back up to Milford Hospital with another headache I sat down for the infusion. This wasn't bad, having an IV inserted was unpleasant but ranked low on the scale compared to recent tests. I developed a yucky metallic taste in my mouth but hey, that's nothing, right? My headache continued until I was lying down flat and subsided pretty quickly once I was on my back.

Tuesday we went out for breakfast with Scott, Chrystal and Finley I felt pretty good going in the morning but developed a fierce headache right before breakfast. I wolfed it down, took the Prilosec (which I guess protects your stomach from the steroids) and drove into the Infusion Suite.

Lying down my headache got better pretty quickly and they started the infusion. This time I had no bad side effects other than having to pee 6 times in about 1.5 hours and the headache when I got up. The nurse who assisted in Lumbar Puncture 1 came over to see how I was doing and how the 2nd Lumbar Puncture went. I mentioned to her about my continuing headaches and she stressed that it was really important to call my nuerologist immediately. So, I did that and my neurologist has advised me to get to the ER for relief.

What I will probably have there is a Blood Patch or an IV Caffeinee drip. We'll see, not having a headache would make my overall feeling of well-being increase dramatically. I may even see some improvement of my symptoms from the steroids if I didn't have this headache.

Friday, July 27, 2007

Test with lots of letters

The neuro office advised I would be having another EMG, August 7th. This was the cold war era torture test I blog'd earlier. Fun. I called to preregister for this and the operator found my file and started reading off the tests I was in for. "EEvalskj at 1 EEasdkljasdf at 2 EMwela at 3"

I'm sure they were something more reasonable but that's how it sounded to me. So, great after vacation I can look forward to coming back and having more torture tests! For all I know these could be simple, but I will find out soon enough, and won't think about it for another week at least.

The Lumbar Puncture (take 2)

The mixture of drugs, reduction in stress and my ability to meditate helped make this an easy operation. The radiologist was a tall guy who popped into the room after the nurses and techs did all the prep work. He jabbed me with novacaine, let it sink in, jabbed further, etc. I made it through that fairly well so I was feeling quite optimistic. In my head I repeated the matra, 'cuddle', 'Tyler' and envisioned us curled up on the couch watching Cars the movie for hours.

There was a single pluck on one of my spinal strings that sent a shock down my right foot, but I hardly felt any more after that. A few minutes later the CSF was collected. I got off the bed pretty quick and wondered briefly why this wasn't what we did first! Ugh, no use with train of thought. Sat in the recovery room for about twenty, got home and lied down in bed 3.5 hours. Got up and we're packing for the Cape now. Onward to the next steps.

Ready for take 2

Hope the drugs work, hope they get some fluid from my spine, hope my radiologist is an expert. Wish me luck.

Wednesday, July 25, 2007

Treatment begins Monday

Instead of Friday, as I had previously planned, my treatment will start Monday with steroid IV for five straight days. The Dr. said I could become ornery and I'm relishing that possibility - so lookout! But Kris has drugs to calm me down and is in charge of keeping me stable :).

This unfortunately coincides with our long-planned trip to Cape Cod Vacation, which has become a harbinger of bad times for my family... We'll have to plan many more trips so it that it doesn't feel this way for much longer!

I'll be trying to put together a plan to minimize travel and maximize vacation time. If the treatment is each day at noon, which I'm pretty sure Monday is at noon. It might look something like this:

Mon - Drive up to Milford, infuse the roids, stay overnight in Milford
Tue - Infuse the roids, rest, drive back to the Cape
Wed - Drive to Milford, infuse the roids, stay overnight in Milford
Thu - Infuse the roids, rest, drive back to the Cape
Fri - Drive to Milford, infuse the roids, drive back to the Cape

I dunno, that may be optimistic and we'll play it by ear a bit. But, everyone who has volunteered to be my driver will have to live up to my expectations. Scott, Kris, Dad are you good enough! Maybe Lawrence will have to drive...

The lumbar puncture (take 1)

This morning I had the first attempt to collect cerebrospinal fluid (CSF). I was pretty high anxiety for a number of reasons. I had consciously decided not to research much into this as I'm sure everyone who had a bad experience would post something, and the majority, who didn't, wouldn't say anything. Unfortunately I saw the picture on wikipedia in the Lumbar Puncture page - i guess that didn't help, but it wasn't even all that bad...

Sometimes you are your own worst enemy.

Needless to say, I was stressed going in. I politely declined my Dr's request that a student perform the operation, that was an easy choice. So we got started I studiously examined the floor and the sink while they fiddled with instruments and instructed me to lie on my side. The novacain injection was unpleasant, a prick here or there and the usual pain I have with needles (ie. they say it only pricks, but for me it pricks and keeps it up). A few minutes later we are ready, I'm trying to arch my back, but my muscles are tightening and I can't loosen up enough.

Without gory details I'll just say she tried 3-4 times, both on my side and sitting up, but although she felt she was in the right spot, no fluid was collected. It was unpleasant. (that's dry humor right there)

Onto the next phase. I'll go back Friday for radiology-assisted Lumbar Puncture. They'll use x-rays to get the needles into the right spot. I'll be confident that my radiologist will kick some ass and make it simple.

Tuesday, July 24, 2007

Neurologist after Head MRI

I've talked about the conclusions already and although I glossed over the likelihood of this being MS, it's not something I've glossed over in my thoughts. It's been hard to come to terms with even as a remote possibility, now it is more likely.

I'm lucky to have my wife by my side in all these meetings and tests, she asks the questions sometimes I just ask in my head. Kris has a sharp mind for medical details and takes nothing the neurologist says for granted, I'm really lucky to have her as a counterpoint to my more subdued response.

I will have a lumbar puncture tomorrow, I guess to rule out Lyme Disease and other things. And, I just learned another EMG in the afternoon tomorrow. Then, starting Friday, I will have five days of steroids by IV. Unfortunately they are different than Bonds' steroid program, see the steroid's for MS link. Nonetheless I'll at least do pushups to try to get bigger biceps!

I have done some research into the steroid treatment and other options, what I've taken from it is that different people react in different ways. The blessing and the curse of the internet is that I can read a blog from someone who had an awful experience with the steroid treatment, or even the IV contrast for MRI, and someone who had experienced significant improvement. I imagine this is due to different causes of MS and the different ways it can present itself, so I'm trusting the judgement of my neurologist (she specializes in MS) because she knows the differences better than internet posters.

I feel better after writing up these blogs, I try to carry all this info in my head (and I guess I still do) but putting it down will make explaining the story easier for a whole lot of different audiences: work, friends, teammates and everyone else. And could in the long run be really useful as I discover what my diagnosis will be and my prognosis.

I'll use this to track the steps of my progress and probably even useful research that I discover so that I can also educate everyone on MS and other demyelinating diseases if necessary.

Head MRI

I was very, very anxious ahead of this test for obvious reasons. I was hoping it would be shorter but since I did need a contrast halfway through and I was getting no happy drugs I remained nervous. I almost freaked when they placed a metal (torture) cage around my head, but the tech added a mirror to the top of this which allowed me to see my toes. I read this page about MRIs so that I would be more informed. It's quite confusing, kudos to people who know all this -- Scott!

I was hoping it wouldn't be bad, and it wasn't. The combination of the mirror and the fact that my headphones fit more comfortably seemed to make all the difference. This MRI machine seemed newer, it was also less noisy. I was getting pretty stressed up to the contrast injection, after which I had to pee severely and had to leave the room. This added a bit more time as they had to do a new image map (or something). But, I made it through this with a LOT less trauma than last time.

As before I sent my MRI's to Scott for a preview. I didn't realize till after I had talked to him about the results how difficult it might be to read an MRI of someone close to you when you find something abnormal. Dr.'s cultivate their clinical distance just to deal with these situations, but I think it flies out the window when it's a friend and I admire Scott's courage and willingness to help out in any way he could, I'm very grateful to have heard about the spots in my brain from a trusted friend first.

The MRI showed several "bright spots" in my brain. This is a term used to signify areas of inflammation caused by deteriorating myelin sheath surrounding nerves. You really don't want these, or really anything abnormal in your brain, at least that's the way I look at it. Scott and my neurologist both agree that these are likely evidence of the disease Multiple Sclerosis (MS). However, before she will give a 'diagnosis', my neurologist recommended more tests. I had another eight vials of blood drawn yesterday. I think that makes the grand total around 26 vials across 4 visits in the last 5 weeks and I have yet to feint! Go me!


The EMG was a test of the nerves in my legs. It consisted of rudimentary torture techniques [sic]and a computer graphing my responses to the pain.

Ok, not quite, but the test included zapping me with an electric current and mapping my response on the machine. This continued for a good 40 minutes and included the test designed to weaken my nerve by continual shocking (torture really isn't a bad way to describe this). Fortunately my nerve was kicking ass and didn't tire -- unfortunately that meant she had to do it several more times!

Then the Dr. came in to see if I had any pain tolerance left, or if I would crack. He did this by inserting a needle attached to the computer into various muscles in my leg while asking me to flex the pierced muscle! That was fun too, next time I will make a game out of it and pretend to be a captured spy in the USSR.

It appears the results of this test were normal.

The MRI (of Doom)

I didn't feel all that apprehensive when I first knew that I was going in to get an MRI. More curious and intruiged by the technology than anything else. I guess I didn't know that I suffered mild claustrophobia...

The technicians noted that it would be a long test since I was due for scans of lumbar and thoracic spine both with and without contrast (injection!). Ok this was awful so I won't get into details. The injection was the least of my problems, claustrophobia had me sweating and irrationally frightened. It was pretty much the 2nd worst experience of my life with the cystoscopy winning by a fairly large margin.

I'm fortunate to have a best friend that is a radiologist so I sent off my scans to him for a preview since my follow-up was a week out. Scott said he did note a cyst but he wasn't all that concerned about it with regard to my symptoms. But it was there, and it wasn't normal, so it was certainly something to think about. The cyst was narrow (iirc) but passed from T5/6-T9. Which means the middle of the fifth and sixth vertebrae to the ninth vertebrae of the Thoracic (middle) of the spine. It was on the inside of the spinal canal, and may be affecting the spinal cord, though that phase of diagnosis seems to have been ruled out.

We had both been expecting to see evidence of a slipped disk, something that would possibly have explained my symptoms while being relatively easy to fix. It unfortunately was not. I spent a few weeks thinking that this could have been the problem after the followup with my neurologist. She noted that it could be the cause as well, but I was going to need an MRI of the head and neck and an EMG.

Seeing the neurologist

The first visit was pretty uneventful. She tested me with a pin pricking my skin as well as a vibrating hammer, which I couldn't really feel on the outside of my knees. My reflexes were very jumpy, more than usual. And she sent me off for bloodwork. Eight vials or so, after the blood tests that my PCP ordered I was getting used to it. She also sent me off for an MRI of the middle and lower spine.

Seeing my PCP

Fortunately my Dr. is very easy to talk to and made it easy for me to describe my symptoms, after doing that he performed an enjoyable test which included stabbing my legs in various places with a needle. Sometimes I noticed the sharpness was dulled. I had no other muscular problems, as he tested my strength, my legs were normal. I still think they had lost some strength, but my legs were already strong so it would have been hard to differentiate.

Now onto another fun side-effect of my symptoms, I have been debating whether I wanted to talk about this on a blog or not, but it's relatively common for my probable diagnosis and there's no reason to be ashamed of it. I have to pee all the time! Seriously, more than usual for those who know me... Fun stuff that is. He recommended I see a Urologist and unfortunately that resulted in a dead end after several appointments, and the worst experience of my life. Fortunately the trauma has subsided with time. The end result though was no improvement.

The second part of my Dr's recommendations included seeing a neurologist. I joked with him that I felt old as I now had a Cardiologist, Urologist, and a Neurologist. He laughed and agreed!

Background Info

As far back as six months ago I started to notice that my soccer skills were diminishing. I couldn't juggle more than 4-6 times, previously I could go over thirty. I started to notice a different sensation in my legs; both legs. I started to fatigue far sooner than I felt I should, and although I was really getting into playing with both Brian and Dave, I was just not the same.

I pretty much ignored this, or tried to just play with it, for a few months until it started to become obvious that there was something serious going on. I couldn't turn, shoot, or make any complex soccer-related movements that were previously second nature. In my mind, I could visualize what I was attempting to do, whether it was shooting from 25 yards, or turning around a defender to open space for myself. I had to concentrate on placing my feet and had to worry about tripping over them or just falling over...

Yeah, something was wrong and fortunately for me I was playing soccer, or else I may not have been quite so distressed. My symptoms didn't prevent me from walking or even running for shorter periods of time, although I didn't attribute my loss of fitness to anything sinister. During games or increased physical activity, like working on my yard, I noticed my feet would develop "pins and needles" (known as Paresthesia), and they were slightly painful.

It is a pretty awful feeling not to be able to function as well as just a few months ago. It was affecting my ability to landscape the house (which had just undergone major renovation), play soccer and brought on fatigue with everyday activity.

The "different sensation" in my upper legs, between my thighs at first didn't bother me so much, I thought it was related to Sciatica or a pinched nerve. As time progressed from about 5 months back, to 3 months back, the sensation began to affect other parts of my legs. First the outside of my knees, then my shins and finally to my feet. It was time to see the doctor.