Tysabri update, part 1

That is NOT my hand but someone else's hand as they get their monthly Tysabri infusion. The Ty comes in a box like the one to the right of the hand. When I get my Ty it's usually on the side of my right hand below the thumb. Which means I do not go to the bathroom during my infusion because I can only use my right hand for the necessary wiping and that would lead to a big mess. Say it with me, "Ack!"

One of my dear readers was asking about Tysabri so I just thought I'd throw all my info up here for anyone else who may be wondering about it and my process to get this newer medicine.

My major symptoms started in 2004 with fatigue and increased depression. By the end of that year it had spread to numbness on the right side (face, arm and leg), difficulty walking, weakness throughout my body, an atypical L'hermitte's sign (a major vibrating throughout my entire body that struck me for no reason), and nystagmus (a bouncing around of the eyes which can make a gal dizzy). There may have been more but quite frankly, I think that's enough for now.

It took two different neurologists to diagnose me with MS a year later in December 2005 even though I was about as certain as could be that I had it in December 2004.

The first drug I started on (on Christmas Eve 2005) was Copaxone, which is a daily injection that we MSers do on ourselves. I had no problems injecting but I had 5 IPIRs (immediate post-injection reactions) which strike randomly for no reason but feels like you're having a mini-heart attack and makes it very difficult to breathe, move, talk and you feel like a lobster might as its plunged into the boiling water. I went on Copaxone first due to my existing depression issues.

I stayed with Copaxone for almost two years and through two more neurologists (which brings the total number of neuros to 4). In November 2007 the latest neuro and I decided due to some MRI changes and constant fevers and giant raised body welts all over from the Copaxone. We decided together to change to Rebif to see if my body tolerated that med better.

Rebif is a different class of MS med called an interferon which comes with its own special side effects such as flu-like feelings, depression, fevers, and others too fun to mention. Rebif is a three-day-a-week injection but again, the injections themselves don't bother me. I don't freak out about them and never missed one. It was just a quick in and out with some occasional bleeding.

Rebif is a drug that you titrate up, which means you start at a small dose and work your way up to the max dose. It didn't take long for me to have constant fevers again, some cruddy feelings, and major depression rearing its head. My neuro suggested I stay at half dose and I had my Psych R.N. play around with my antidepressant doses and meds. Finally, I seemed to get stabilized with the depression but the other stuff hung around.

Then my liver enzyme numbers started to increase (another possible side effect) and we stopped Rebif for a bit. Then I went back on half dose and they checked the numbers again. Eventually I stopped R again this summer due to liver numbers and feeling cr@ppy most of the time.

My 4th neuro suggested Tysabri as the other interferon injections (Avonex is once-weekly and Betaseron is every-other-day-injections) are similar to Rebif and would most likely produce the same sorts of side effects.

The problem with the 4th neuro is that offered Tysabri one partial day each month and that was it. That meant if you were sick you went without for a whole other month. I think the drug makers made it to be infused every 28 days or so for a reason.

That led me to another neurologist and an okay to start Tysabri in October. I'll tell you more about my personal experience with Ty in part two of this spellbinding blog post. I started this before I went in for my infusion today and I'm cooked as they say at the infusion palace. I apologize for any typing and grammar errors now because I'm not proofreading this one. Night!

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.

Monday, plan of stupidity

The plan didn't work so well. I have decided to just keep on planning and most likely teaching everything. It's too much hassle to find work for someone else to do because if I'm already explaining it then I might as well just do it.

I called the psych R.N. and will be seen there on Wednesday. That's something to look forward to in my pathetic existence.

I called the neurologist's office hoping that maybe they'd offer me a round of IV steroids, which I abhor by the way, but I am desperate. I told the nurse about my daily fevers, and the pain in my back and legs, and the cognitive stuff and the depression. The nurse talked to the P.A. who said, "Yep, it sounds like your MS is acting up."

No sh!t, Sherlock. Then they offered to write me a note so I can get out of work.

The ultimate advice was to wait until I get Tysabri, which is at best another week and more likely two weeks away, because that will solve all my problems. (Yes, that's the gist of the conversation.)

Wow, are you kidding me because I know people who are on Tysabri who weren't miraculously cured with one infusion or even many of them. I must be special.

I have not felt really decent for several days in a row since about April which is when I had the last round of steroids. Go figure.

I'm miserable in the heat and May and especially June were horrid for me to try and teach and not want to hurt small children. Summer was a mess because my apartment has huge windows which face the sun so my apartment was always ridiculously hot. I hardly ever went outside which is one really awesome way to not spend your summer.

I have been "hanging in there" all summer with the other neuro's office. I am so f*cking tired of hanging in there. This hasn't been days and not just even September where I have been feeling lousy. It's been most every day since May for crying out loud.

I stayed tonight and cleaned off my desk and put out buckets for their assignments that the children don't do. Then I have to remember who didn't do what because they have missed three things and need new sheets. I can't find the d@mn sheets. I can't find my sanity right now.

I am so sick and tired of waiting and hanging in there. Right now the rope is fraying and my plan is obviously stupid because it just doesn't work. Another brilliantly f*cked up example of how I can't do the smallest of things to make it better. There just isn't the time during the day to plan it all out because I have to spend every waking moment involved in some aspect of this stupid job, like marking papers which I can't remember what the answers are even though it's the twelfth paper I've marked. It's like looking at a blank slate every time.

I know everyone wants to help but it only ends up with me having more work and more panic and more anxiety.

Now I need to go because there is more work that isn't done, of course, and I need to devote the rest of my evening to maybe finding something to eat and then grading more work and making up new worksheets because this math group couldn't be much lower.

Yes, I know I'm b!thcing but I think I have earned it. That's what happens when you hang in there for five or six months. You start to hurt and feel frustrated and mad and angry at yourself because you can't do one thing right that will help you in the long run.

I cried coming home in the car today and my contact fell out. I'm praying and begging for help here and I'm in more pain today than normal. I know we all have burdens to bear but could someone else take this for a while?

I've just reached my limit.

Less frustration and restrained elation

Okay, school was slightly less frustrating today because someone discovered that maybe "some" of what we were doing didn't make sense in ELA. Which means that tomorrow morning during our planning period we get to have another meeting to talk about why it doesn't work. Then we can all go back to our classrooms afterward, frustrated yet again because we don't have the answer but thanks for using up 42 minutes of my work time, which I desperately need to use to correct papers and do my actual job.

By the way, no other grade levels in the whole building have to have this meeting. Just my grade. Everyone else can actually use their planning time to work.

Oh, and it's Open House night which means not only do I get to work, have less time to do my actual job while feeling bitter and frustrated more than normal, but I also get to come in and work from 6-8 p.m. I arrive at work about 6:45 a.m. so this presents itself as a rather long day, regardless of MS.

I know Open House is important but couldn't it be shorter?

Or couldn't it be later in the year instead of rightnow (yes, I meant to type those words together!) when we still can't get our act together in the fifth-grade department? I swear there have not been more than three days consecutively where we actually followed a real schedule, uninterrupted with new changes.

Everyone at the grade level is frustrated and I know that tomorrow's meeting will continue that frustration. Don't people know that they need to trouble shoot this kind of stuff before school is actually in session?

Big sigh...

On to the good stuff now.

I met the new P.A. who reminds me of my brother because they have both have had cleft lip repair done. (There is a slight scar if you know what you're looking at.) That has now made my mind think of this man as M. instead of J., which he rightly is according to his name tag. He's got an unusual sense of humor but he listened and showed me my MRI spots and we talked about how my O-bands were ridiculously high (like 1,000) and how he's surprised there aren't more lesions. (Yes, that was a run-on sentence, so sue me. I'm not worth much.)

We talked about the failure of Copaxone and how I honestly gave it a "good" try of almost 2 years. Then we talked about how Rebif hasn't worked for me and how I would like to head to Tysabri Land.

He hemmed, he hawed (hee haw, I'm flipping hysterical, huh?) and we looked some more at the MRIs and talked some more.

And then the moment arrived when he acquiesced and said, "Yes, you may have the liquid gold."


I'm getting Tysabri, yippee! I had my blood work done today to check for the JC virus and to see my current liver numbers. I've been off Rebif for more than a month so all I need now is the infusion center guy and the insurance people to get everything all ironed out.

I just need to sit back and wait for the call about an appointment and costs. This is a relief for me as this neuro's office has an excellent reputation, they are open five days a week, and there is a whole process for how the doctor gets the messages from patients electronically on his computer and he calls them himself after office hours. The doctor actually said that he will not allow any lax office people and that customer service is important to him.

This might be some sort of neurology-Utopia here.

That's great but I still wish we didn't have the damn meeting tomorrow.

Tomorrow: Definite frustration and possible elation

Tomorrow, Wednesday, is the appointment with the new neurologist. That's what I am hoping will be the elation part of my day. I've picked up all my MRI films from the local hospital and found my old disk to pack up in my health binder. The paperwork is filled out and my questions, symptoms and meds sheet is all typed up and ready to go.

Prior to that appointment is another day at work. I am feeling more and more frustrated each day I walk in the door. We have less time to teach in the day, thanks to a new and "improved" schedule, and more things to teach in that time.

I have a 72 minute block for English Language Arts. Now take some time off the end of that because we need to switch for math classes. Within this 72 minutes, which is really more like 68 minutes, I am supposed to be teaching this subject for 90 minutes uninterrupted.

Okay, I am no fifth-grader on that Jeff Foxworthy show but the minutes just don't add up. You can't do 90 within 68. It doesn't work.

Now let me add in 5 inclusion students who get pulled out for part of that time and every other day I have 1 or 2 students also leaving to go somewhere else for other E.L.A. instruction. The pull-outs are supposed to be in addition to my 68 minutes but obviously, they're not. If the kid isn't in the room they can't be there for my part of the instruction.

The children who leave are supposed to receive instruction at "their" level, which can be anywhere from a 1st to a 2nd grade level. That's great but the rest of the time the textbooks and worksheets and everything else we use and read is geared to our fifth grade level.

We don't want to frustrate the children but they must be frustrated because they can't read what we're doing. That's so damn handy, I can't stand it. (Yes, that was sarcasm!)

I am frustrated because we do this every day. Someone or many someones leave the room and do something that I am not doing. They get tested on what I am doing. Does anyone else see the insanity of all this?

I'm supposed to keep on going throughout the day when, let's say, 7 or 8 students in my class cannot read the materials in front of them. I'm frustrated, they're frustrated. There must be a better and smarter way.

Apparently this is supposed to be "the better and smarter" way but I've got to tell you that someone is trying to make lemonade from acorns here and I'm not drinking this Kool-Aid!

Allow me to be silly

I love my public and my fab comments I received about my widget counter birthday on yesterday's post. Widget counter's birthday is TODAY and he received a smattering of special gifts. He got a pet rock and a new book filled with quotes about serenity and zen. I also allowed him to take a few hours off and circle around the world wide web.

I have papers from the new neurologist already. They came in the mail today. Yippee, yippee, yippee.

Pleeeeeeease power that be from above, allow this doctor to be "the one". I don't need love; I need a really decent doctor who listens to me and will treat me like I am a real patient instead of an intrusion in someone else's four-day work week.

That's all I've got tonight but I do want to send out some good health vibes and feel not like dung vibes to everyone who needs them. Right now I can still smile and that is something that has been missing from my life for a long, long time.

Tomorrow is my widget counter birthday AND I may have some good news

Tomorrow is the official one month birthday mark of my little widget counter at the bottom of the page. Now I know blogging isn't about how many people read your stuff but I must admit that I am always bedazzled that anyone reads this drivel at all. And someone does because I only have about two friends who read this regularly and we've already established my family's view on my writing (stupid, waste of time, never get you anywhere) so we know they aren't reading this either.

So my deepest and most divine thank you's from the bottom of my wizened old heart to each and every cyber angel that comes to visit and then gets their cyber-wings at last! (In case that made no sense, that was a reference to a famous Christmas movie whose title is on the tip of my MS tongue, just out of reach.)

And shhhh... I'm gonna tell you a secret. Lean in close. Closer. Look around and make sure no one else is watching you.

(** Super sensitive secret material** I have procured an appointment with a new neurologist of my choice who offers Tysabri more than one day a month. I actually talked to their office today and they are sending me a bundle of paperwork to do in advance of my appointment with them next week!!!!! They also asked me to bring any films or discs of my MRIs with me so that the neurologist could look at them.

OMG! A doctor who looks at these super ridiculous pricey MRI materials instead of just reading the radiologist's report, can you believe that? And, get this, the office lady said I could see the P.A. or alternate between the the P.A. and the neuro, or thisisflippingunbelievable here, I could just see the neuro.

I am dancing and humming Christmas carols, my friends. With a smile on my face. Nothing is stopping this Flashdance moment. I feel on top of the highest mountain looking around and finally seeing some sunshine.

Free at last, free at last, I will be rid of Neuro #4 soon enough and that, dear readers, has brought me to the mountain top.

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.