Neuro news

I had an appointment with my neuro's office this afternoon to go over my latest MRIs. Good news!

The lesions are all still there but some of them have shrunk and there are no new ones or enhancing lesions. Yippee!

I also talked him into giving me ten dollars for the walk so that I have now reached my goal of $2050 raised by me.

What a great appointment all around. :)

MS and me

I was diagnosed with multiple sclerosis in early December of 2005. It took two neurologists to finally diagnose me correctly long after I had thought that MS was my diagnosis. The first neurologist couldn't find anything wrong with me even though I had lesions on my brain. He told me that there was no way I had multiple sclerosis. Maybe I should write and ask him for my money back.

The pictures above are not mine, but they are MRIs (magnetic resonance images) of a person who does have multiple sclerosis. I just searched through google images for an image that would be appropriate to go along with today's post. You can see the lesions or sclerosis (scars) on the brain. They show up as bright white spots. When I look at my own MRIs it seems like everything is lit up or nothing is so I can never tell my own lesions from what should be there. My new neuro's PA has to point them out to me and he does.

I have one lesion in my spine around C3-4 and a handful or more in my brain. The ones in my brain have lessened over time which is possible. Lesions can heal themselves (or remyelinate) but it doesn't mean that they will. I have had a decrease in my number of brain lesions so that means some of mine have remyelinated. My spinal lesion has been there since the 2005 diagnosis so that one appears to have staying power.

When I was originally diagnosed, after three days in the hospital and one botched LP (lumbar puncture aka spinal tap) and one done under fluoroscopy (X-ray guided) and a bazillion other tests, I went on Copaxone. Copaxone is a daily MS med that comes in injectable form. Yep, that means that you give yourself a shot every day and remind yourself every day that there is something going on in your body that can pretty much do whatever it wants to do. Two of my greatest fears are waking up blind in one eye or paralyzed on one or both sides. Sometimes MS manifests itself that quickly, one moment fine and the next with a big problem.

For some people there is a denial stage when they are first diagnosed. For me, it was more of a "Finally!" moment, one I had been searching for for one year. I presented with lots of various MS symptoms starting in December of 2004. Some symptoms started long before that, primarily fatigue which has been a problem of mine since high school. My first major symptoms were weakness, numbness, difficulty walking, nystagmus (eyes jumping from left to right), dizziness, and a weird variation of L'hermitte's sign which was like an electrical current passing through my entire body which would render me unable to move for about 15-30 minutes. All that and there was nothing wrong with me!

Those first two years of being diagnosed, and most definitely the first year, found me often online at a community called MSWorld.org. It was a place where I could go and ask questions of other MSers and feel like I belonged. No one in my family had had MS and my mom didn't even believe I had MS at first, even after the neurologist diagnosed me. (Not to mention that no one in my family came to see me in the hospital for three days and they lived 50 minutes away. I drove myself to and from the hospital.) That site was a godsend for me. I also found MS blogs that were another source of inspiration.

I no longer have to go to those sites every day like I did in the beginning. I am a person with MS, an MSer, but I am also a writer, a teacher, and a woman who is closing in on 40. MS isn't my whole life anymore but it does affect my life on a daily basis. I take a number of pills in the morning and at night to control my symptoms. Lately the pills haven't worked as well because I am often not able to sleep throughout the entire night and my legs have become more restless. I also am out of work on a medical leave that ends on 1 May. I worry about my cognitive skills that affect my writing on here. (You get the cleaned up and edited version.)

I also no longer take Copaxone daily. I switched to another medication called Rebif, a three-times-a-week injectable medication known as an interferon. I am now on a third injectable med called Tysabri. It comes in an IV infusion form once every four weeks. As I type I can look down at my right hand and see a slight bruise from a blown vein. On my left hand I have a much larger bruise on top of my hand where I had a successful infusion on Tuesday.

I have MS and it has me. I am a blogger with MS but I write about lots of things. If you have any questions about multiple sclerosis please ask me. I'll do my best to answer them. Thanks for reading.

PS: I need to send a shout out to my sister, CNS, who is going to make a monthly donation to the National MS Society. You rock, sissy. Ditto.

Shooting the tube

Today was my latest brain MRI and I got to wear an interesting cage type helmet such as the one above. If you've never had a closed MRI of the brain, then this is what you look like before they slide you in the machine. There's some MRI places where you can watch TV with special goggles or listen to music but at my MRI place you just get tie-dye type ear plugs and massive banging, booming, whizzing, thwacking, and other such mishmash of loud noises.

The thing is I find it all incredibly peaceful. Most people don't. Some people freak out because it's kind of a small space and shooting the tube (vernacular for getting an MRI) makes them feel claustrophobic. I used to worry about that during the first two MRIs but I've had probably about six or seven now and I like to think of them as restorative meditation, of sorts.

They slip me in, I close my eyes, and away I go into an almost trance-like, slow-breathing state. I rather enjoy it and hardly move. I am a model (a fat one) patient because moving is a no no in the MRI process as it can distort the scans. We don't want any distorted scans now, do we?

I have not started the Christmas tree building process yet but I think I am going to bring the box in the living room tomorrow. Today I went to Wal-Mart and the pharmacy and I slept in until about nine so I didn't get as much done as I had planned. I also walked for the third day in a row slowly because my back has been bothering me and I'm not sure if it's Tysabri-related or not. Guess I should write it down in my book of symptoms and such and start tracking it.

Thank you to all our veterans and our current military people serving here and abroad. Happy Veterans Day and bless you for your service.

That's all I've got.

Tuesday quick bits

I made it through Tysabri #2 okay. They called the TOUCH program because of my worsening fingers and cognitive stuff. Imagine that, a facility that follows protocol! Thanks to my old friend, er not old friend, a friend I've had for a long time that shared lunch with me on such an emotional day for her. Hugs to BJM.

Not even a bruise from the IV which was put on the inside of my right hand. They are some good IV stickers over at the infusion palace. This time I held the remote and switched channels and watched bits of about 5 different cable channels. I don't have good cable at home, just the $8 a month cable that has a few extra channels thrown in for kicks and giggles. I also elected for a warm and pleasant smelling blankie to cover me up while I "relaxed".

I wanted to smack Sally Field in the face again when her once-a-month Boniva commercial came on. Gag me.

Today is my second visit to the new neurologist's office (neuro #5) to see the P.A. I am hoping for a good visit and I will be asking about my MS symptoms, a new MRI, and the supplements I mentioned the other day: quercetin and omega 3 fish oils.

I feel a weight lifted from having turned in the sick bank leave papers. It's done and the committee will say yes or no and there's not much more I can do about it. It's out of my hands and I've done all that I could for that.

My dad is having more problems but did not go back to the ER yesterday; they almost had to go but are playing it by ear for the moment. The heart catherization has been put off for the moment until this other stuff is done playing itself out. Let's just say there has been excessive bleeding, vomiting, and chest pain from a man who had surgery about 20 years ago and told he had about 10 years to live then. Plus, he secretly smokes which he knows, knows, knows is against every rule in his medical book. Eh, men!

I slept more deeply last night and feel tired from Tysabri #2 but if it works, then all of this will be worth it. Maybe there will be a nap in my future this afternoon. Time to go get dressed and ready for the appointment.

Don't forget to vote whoever you choose to vote for in today's election.

The Messy Stuff about MS

The path to an MS diagnosis started out with small stuff like being tired a lot, almost all the time. Then there was the occasional fall over nothing, like trying to step up on a curb but your leg wouldn't cooperate. After that, the falls became more frequent when I went out and tried to do some walking for aerobic benefits. I'd keep falling over nothing on the sidewalk and end up bloody and limping my way home.

I noticed the big stuff, the Aha moment, over my Christmas vacation in 2004. I had just bought a new car, had survived the family holiday meal, and was enjoying some time off. It was like watching dominoes falling one after the next.

I started becoming dizzy and I was dropping things, they just slipped right out of my hand. I started having more noticeable difficulty walking, but this time in my little apartment. I was swaying and my legs grew heavy. I could barely get up and down the stairs to my bedroom in my little apartment. My face and arms became numb and cold as if I had had a major dose of Novocain administered in the wrong place. My arms became heavy and I could hardly lift them to do the most basic things. At work people would mention that my eyes were bouncing all over the place, something called nystagmus.

I called my primary care doctor and he gave me some meds to try and stop the dizziness. They didn't work. He ordered blood work and then sent me to neurologist #1 whom we shall call Dr. Clueless. By this time I had a strong inkling that this could be multiple sclerosis due to my internet sleuthing. (I'm not a physician, I just play one online.)

Off I go to speak with Dr. Clueless and tell him my health issues. At this point, everything had been going on for a month and a half. He ordered an MRI of the brain that came back with lesions. Now lesions could be a sign of MS but he blamed them on a car accident I had been in from 1989. He threw up his hands and said, "It's not MS and I don't know what to do with you." Exit Dr. Clueless.

In the meantime, I had visited an ENT for some pretty thorough testing for the dizziness. Those tests all pointed to something neurological causing my issues.

My primary care guy set me up with a second neurologist after I had another really bad episode in the summer of 2005. Extreme weakness in my legs to the point where I could not drive and could barely walk. Let's call neurologist #2 by the name of Dr. Multiple Diagnosis. He diagnosed me with complicated migraines and something else I can't recall now. I didn't have either of those issues.

That December (2005) he admitted me to the hospital for three days of testing to see why I was getting worse. I couldn't sleep without medication, couldn't stay awake without medication, I had muscle spasms and twitches all over my body. I had sensations where my whole body would just vibrate ferociously and I couldn't move for 20-35 minutes. Plus, I had all the other stuff that came along for the ride from 2004.

Dr. Multiple Diagnosis arrived early at my bedside on December 7, 2005, to tell me I had MS.

What a relief to finally know what was wrong with me.

I think his residents might have been surprised that I immediately asked about lesion locations; I now had one on the spine which really pointed to MS, along with the brain spots. I asked about treatments, all shots at that time. I asked intelligent questions because I had been certain all along that I had MS.

I was in the hospital for the better part of three days. I had lots of blood drained out of me and endured what seemed like a kazillion tests: 2 lumbar punctures in the same day because the first one was badly botched and left me bleeding, X-rays, more MRIs, tests for seizures, evoked potentials exams, anything you could think of came my way and I handled it all in stride.

No one from my family drove the 45 minutes to come see me while I was in the hospital. They didn't call me; I had to call them to update them. Even my mother, who is a nurse by trade, didn't believe that it could be MS. She thought perhaps I was making it up.

My own mother did not believe me.

That's the kind of messy stuff that needs to come out from the darkness and be exposed to the light. The lack of caring and empathy by my family hurt worse than all the tests, including the two lumbar punctures.