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.

The roll of the MS dice

Lots of people ask me how I am doing on the Tysabri for my multiple sclerosis, which is a hard disease to type by the way. Tysabri is one of the newer meds for MS and is given once monthly via an I.V. method. The ease is great compared to other meds for MS that I have been on. Once a month I go to my infusion palace and sit in a comfy chair for two hours and watch the good cable TV. (Alas, for budgetary reasons I have the most basic of cable services at home which consists of about 16 channels. These include the major networks, a CNN, the E channel, the Style network, and a few different PBS channels for about eight dollars a month.)

The only down-side to Tysabri, for me, is that I have increased back pain and fatigue for the first few days after a treatment. Usually the next day or two after a treatment, I am laid out like the flu has hit me. There's also the drive there and back in the winter which is about 45 minutes or so. The price can be an obstacle for many people but my insurance has been covering the entire costs of both the medication and the infusion facility costs. I'm a little worried come January if the gravy train will still be rolling or if I will be paying some of it. I'm hesitant to venture that I'll be paying out of pocket for some of it but not the entire almost three thousand dollar EOB I get.


I have, in the past, taken an injectable medication once a day each day for about two years (Copaxone). I also took Rebif which is a thrice-weekly injectable after it was deemed that Copaxone was no longer my best "shot", pun meant there.


Tysabri doesn't cure MS or make your symptoms stop happening. People always ask how my symptoms are and some of them are the same, some of them have gone away. That's just the roll of the MS dice. Anecdotally, there are people who are finding some symptom relief as they continue on Tysabri. I knew some people who are up in the dose range of 25-28 infusions and they are doing well with no progression.


That's basically what Tysabri is supposed to do, stop progression and lessen flares. Its efficacy rates are about double what any of the injectable meds are putting out there. Then again, there are some people who find they are allergic to Tysabri and that takes it off their list. There is also a deadly disease called PML that you can get from taking Tysabri. Recently, an American patient contracted PML and died.


For some people Tysabri isn't what they want or need. There are lots of other options to try before Tysabri and some people don't use any meds at all. I prefer, personally, to use everything in my arsenal to keep me upright and moving around to the best of my ability. Some days that ability is better than others.


For example, I just took two bags of recyclables to the containers outside of my building. Neither bag was heavy but I had to climb up the stairs in my building to the main door, then I went out the door and down the stairs to the ground, and walked past a few buildings to the garbage area. I was breathing hard on the walk over and on the way back my own back was all out of sorts. By the time I got inside I was sweating and had to put shorts on and sit in front of the fan to cool myself down.


That's a problem I have all the time. Walking and trying to carry things really tuckers me out. It doesn't matter how light something is, it becomes like a marathon. That's why I try and walk with the Walk Away The Pounds DVD a few times a week. I am trying to also get myself to go from playing the Wii sports to using my Wii fit as soon as my Christmas tree leaves, which should be sometime soon thanks to BJM. I'm trying to build up my strength slowly while taking care of my legs and my back/hips. I'm a big girl so I have to move and lose the weight however I can, no matter how long it takes.


My goal is to be fit and as strong as I can be by the time I am 40, despite MS. I turned 38 in September and I have a lot of weight to lose. I'm tired of being the fun one with the pretty face. I want to be able to fit into my pants and then have them be too big so I can buy smaller pants and then repeat the cycle. I have to battle the daily, constant fatigue and weakness in my legs and back/hips but I can't let that stop me.


Just as I have symptoms that change, I need to do what I can to make my body the healthiest it can be. That takes time for all of us whether we have MS or not. As an aside, my infusion palace has shown some anecdotal evidence of their patients starting to not have as much as fatigue around treatment number eight. I just finished Tysabri treatment number four and I am hoping that I will see that change. I know it's not what Tysabri is supposed to do but I am hoping for my own mini medical miracle because fatigue is my biggest problem symptom.


Wishing you health and happiness in this new year,
Weeble Girl

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!

Strike two was Rebif ....

Strike two was Rebif. There's a syringe of it to your left. It's one of the three interferons. Those bad boys carry with them more baggage than a drug like Copaxone, not an interferon, in many ways. Interferons generally don't give you the ginormous welts that Copaxone can, though. Welts is a simplified word for site reactions.

Rebif came around in my life in November 2007 after my new neurologist saw my long-lasting Copaxone welts, felt them buzzing hot, saw the fevers, and looked at the latest MRI which showed more lesions. "Let's try something new," he suggested. I went for Rebif which is a subcutaneous injection, like Copaxone and Betaseron. Subcutaneous just means below the skin into the fatty area, not into the muscle unless you make a bad judgment call and get the muscle by mistake. Can we all say, "OUCH!" on the accidental muscle injecting?

I once injected into the muscle in my arm and knew it right away. It's a whole other type of pain that is much different from an IPIR. It hurts right away, usually bruises up nice, stays tender for a bit, and my muscle twitched for a long time with some spasms to let me know (for sure) that that was NOT a fatty area, thank you very much!

I chose Rebif because it was already pre-mixed (like Copaxone), had the smallest needle of the three interferons, was a three-day-a-week shooting schedule, and it was a subcutaneous injection. Avonex is a once-a-week injection into the muscle. Betaseron is an every-other-day injection but needs to be mixed at home before each injection.

Rebif, for me, caused an intensive increase in my depression level. I felt awful while on it, miserable and wishing someone would come drag me out of the hole I was in. I had my anti-depressant dosage increased to no avail. Then I went on another AD and later ended up increasing that to make me feel semi-human again.

Rebif also messed with my liver enzymes, sending those numbers through the roof. I think it was Rebif in conjunction with the myriad of other prescriptions I swallow to stay alert, be productive, fake feeling well, control any spasms, keep my legs from not being too restless, and to try and get to sleep and stay asleep at night which caused the spike in numbers. I was off Rebif for a while until the numbers decreased, some 4-6 weeks or so. I'm too tired to go look it up, honestly.

Then I went back on Rebif for a bit and I am now off it again. I seem to run constant fevers with the Rebif, low-grade ones of about 100.5 which make me feel cruddy. Yesterday was the first day when my body temp was only 99.0 and that was much better. I'm still battling some major depression, even with the meds, because this summer was a waste of sorts because of the heat. Since being on Rebif, my body has felt worse and worse with new relapses.

Regardless of Rebif or not, I am now almost completely heat-intolerant at this point in my MS. My body cannot stand any temperature over about 80 degrees and any humidity that is noticeable drops me to my knees. I spent almost all of my summer inside next to a fan or in the air-conditioned bedroom. I slept for hours and hours for the first four weeks of summer vacation because I am constantly exhausted. My legs have writhed with cramps and spasms I wouldn't wish on anyone. Spasms where my whole leg becomes immovable and the muscles on the back of my leg ripple and crackle so painfully that I can barely breathe. And these spasms last for 30 minutes or more at times. I'm noticing my MS getting worse and truly affecting my quality of life. No one else may see it but trust me, it's there and it's awful.

The Rebif is not able to beat back this messy stuff called MS. It just can't do it. I'm 37 and my QOL is nil. I'm tired beyond belief and not sleeping well again at night. I am stiff and my legs are heavy and hard to move. I probably could have used a dose of IV steroids over the summer but the message I received from the neuro's office was to hang on for another week and repeat.

Here I am on the cusp of full-blown work starting and I am dragging around like a zombie with really bad coordination. I need to head to the shower so I can get clean and then get to school and work on my room. I'm starting to look forward to teaching in my cleaner and more organized room, so that is a step up.

I just want my body to cooperate. I can't afford, in any sense, to be "off" when the kiddos walk in the door next Wednesday. People without MS or exposure to it, or some similar illness, generally can't understand that just the movements of daily life suck incredible amounts of energy out of our banks. I don't recharge after sitting down for 5 minutes. Sleeping eight hours isn't a dream; it's a necessity and that's still not enough for me.

So Rebif is strike two. I came, I tried, it just didn't help me beat back the MS. Right now the MS is winning.

Yesterday I drove out to the neurologist's office to fill out the Tysabri paperwork. I am hoping that this will be a viable option financially and that this will be the home run I have been dreaming of in my labored and interrupted sleep. On deck... Tysabri. If I was a betting woman, which I'm not if you know me, I would put all the money on Ty and let it ride. This HAS to work for me.

Strike one was Copaxone ...

Strike one for me was the MS drug called Copaxone. This was my first choice for an MS medication; a decision I made while I was in the hospital for three days awaiting the diagnosis that I had already made several months prior.


Yes, it's a daily injection but it doesn't carry with it any of the side effects of the other three injections which are all interferons. Interferons can cause all sorts of wonderful benefits such as free increased depression, buy-none-get-one-free flu-like chills and fever, and a 100% off sale on any joint pain and body aches. Who in their right mind would bypass those freebies?


Copaxone wasn't supposed to do any of that, so I was all for it. I injected my first time on Christmas Eve 2005 in my apartment before I went out to a friend's house. I didn't wait for the nurse the company so generously provides to come and show me how to do the injection; I had the handy packet of information and I had watched the DVD that they provided so I felt secure in doing my first injection all by myself. (As an aside, if you get diagnosed with MS and you're deciding upon an MS drug or drugs, you will receive more information than you could ever want, all packaged in a big binder type dealio with maybe a little carrying strap to make it look ultra-cool!)


I used the auto-injector for my shots, which is a device that gives you a neato way of loading up your syringe (while twisting your body into the right position so you could hit that day's injection spot) and then hitting the trigger button so the needle comes piercing through your skin quickly and easily. I was a pro at the auto-injector.

My body didn't tolerate Copaxone well but I used it for almost two years anyway. I always had large, red, burning, itchy welts after injecting. It didn't matter if I used heat or ice, put gel or cream on after the shot or not, massaged the area or pushed down on it; those welts were there to stay. They came and settled in for weeks so you could pretty much always tell where my last two weeks' (or more) worth of shots had been.

I also had constant low-grade fevers because my body wasn't tolerating the drug well, the welts, and 5 IPIRs. An IPIR is an Immediate Post Injection Reaction. Nasty little buggers, these things come on fast and strong, ergo the immediate part of its moniker. For me an IPIR was within seconds of taking a shot where I would have difficulty breathing, my face turned red, my body felt like it was on fire, and my chest felt like someone was stepping on it. They would last anywhere from 5-20 minutes or so.

There was no predicting an IPIR, no reason for why they would happen when they did, but it was unpleasant the first time so I was smart enough to always inject with the portable phone near me after that. This way I could dial a friend, gasp out my predicament, and listen to them talk calmly while I tried to wheeze my way back to normalcy.

All of the MS injectable drugs are obscenely expensive, well over a thousand dollars for a month's supply, which for some injectable medications may only be 4 shots (Avonex) or maybe 12 shots (Rebif) or every other day shots with Betaseron. MS is not a disease that suits anyone well, let alone the uninsured or under-insured.

One nice thing is that Copaxone comes packed with little freezer packs that you could use again and again and a styrofoam box that can hold just enough food for you and your freezer packs, in the event that you choose to go picnicking!

I also received free, yes FREE, alcohol wipes with my Copaxone. Actually more wipes than shots so that I had a nice bonus supply in the event of any other minor medical malady. I did appreciate that.

Copaxone used to have to be stored in the fridge so that every time you opened that swinging door you were yet again reminded that you had an incurable disease, one that most people can't see, one that eats away at your brain and spinal cord like Pac-Man, one that is kinda tricky to pronounce which makes those of us even without speech issues sound like we're lisping.

Copaxone was strike one for me. I came, I tried, it beat me down. I moved on. Next on deck was Rebif.

I'm on vacation and I could have saved hundreds of dollars

This will be a short entry because I'm on vacation, woohoo. As mentioned in today's title, I could have saved hundreds of dollars with this vacation. "How?" you ask. Inquiring minds desperately want to know.

My neurologist's visit today is what brought forth my vacation. "I'm off my Rebif again!" Woot, woot. It's vacation time.

Rebif is a medical drug that is used to try to halt the progression of multiple sclerosis (I think that's what it's supposed to do). It's a shot given subcutaneously (into the fat which I have lots of, not into the muscle) three times a week. My recent invoice shows that 12 syringes of Rebif cost the insurance company $2,039.92.

Thank goodness I have great insurance and my co-pay is a mere ten dollars. Most people are not that lucky and pay far more each month. Some people have no insurance at all and try to pay for this out of pocket.

One week of Rebif could have cost $509.97.

Today's medical provider-patient discussion covered the fact that my QOL (quality of life) is somewhere above lichen and one-celled organisms. It's far below what it was six months, let alone a year ago.

There was discussion about a possible move to another MS treatment called Tysabri which isn't an injection. It is a once monthly infusion, something Sally Field can probably get behind with her strong interest in Boniva. (I mean who could possibly remember to take one pill a week for a whole month. I mean, that is NOT easy, my friends.)

Tysabri will probably cost me more than ten dollars but if it will help me to regain my QOL, then it deserves some serious consideration.

My doctor mentioned that you can't tell I have MS by looking at me. I don't need any assistive devices and outwardly I'm just weeble-shaped. Surprisingly, my muscle tone is good which is probably what allows me to get around as well as I can in my wobbly manner. However, it doesn't stop the neuropathy or burning pain in my hands, my overall loss of strength in my limbs, the crushing fatigue which makes me sleep at times for up to 16 hours, the spasms in my legs and the rest of my body, or the feeling of wearing a terribly tight brassiere. (I bet Sally Field doesn't know about any pills for that!)

I may be on vacation but I won't need to pack the sunscreen.