Well, That's Encouraging--NOT

I have completed four days of IV steroids, and am now taking an oral taper so I don't go through some crazy withdrawal. Typically, by now, steroids have responded to my symptoms, and usually, I am only on three days of IV steroids. This was an extra day's worth. However, I've got nothing.

My double vision is still as bad, if not worse than when I saw my neurologist a couple of weeks ago. I have numbness in both hands and down the right side of my leg. I have a little numbness in my feet, too.

My doctor called me today and told me he was concerned that I hadn't responded to the steroids, and that I was having such bad exacerbations while being on Tysabri--the drug that's suppose to kick the ass of all other drugs. Within the month between two of my MRIs, I have 10-15 new lesions! That's not supposed to happen. So, Dr. H thinks I may have developed an antibody to the medicine--an antibody to the antibody. In other words, my immune system is really f#@*ed up.

I have to go for blood work tomorrow, and he wants to see me in his office. He's great in that he says, "Just show up; no need for an appointment." I appreciate that sense of service. But I am tired of going to all of these appointments, the money they cost, etc.

Usually, when on steroids, you get a whole boost of energy. You become wonder woman! Not this time. I told the doctor that I am so tired; that I have none of that energy I usually get, and he said he wasn't surprised. It's because I have so much going on in my brain. I also asked him if it could be causing any cognitive problems, as I have been "losing" words. Sometimes, the word escapes my mind, and I just point to what I want like a gorilla. Embarrassing.  When I told him I am supposed to be writing a dissertation, he didn't seem optimistic about that happening right now. Awesome. I'm paying tuition to be writing a dissertation I am not physically capable of writing, right now? Son of a bitch.

I just hope it all comes back. I hope my vision fixes itself. I hope m mind becomes sharp and focused again--as much as it ever was.  But right now, I am not feeling hopeful. In fact, I feel depressed. I have felt down for days. And there's really nothing that can be done.

Update: One Year Later

I haven't posted in a year. And yet, I am in the same place I was this time last year. I had "gotten better"; I had gone into remission. But now my symptoms are coming back with a vengeance.

December 12, I had an MRI--just a routine MRI. I had a new lesion. That led my doctor to freak out about PML (a serious side effect from Tysabri), and resulted in talks about a spinal tap and eventually another MRI. The lesion was stable, and actually got a bit smaller in the 10 days between the two MRIs.  Then, toward the end of January, I started having double vision. So, my neurologist ordered another MRI. I had numerous new lesions, within a month since the last.

So, now I am wearing an eyepatch to correct the double vision. My right eye turns inward toward my nose, and it is droopy. I look slightly like I have Down's Syndrome, and when I told B, he said, "Yeah, I can see that." It's from sixth nerve palsy--a lesion on my brain stem. I'm having numbness on the right side of my body. My balance is "off."  Everything is harder. My actions are more awkward. I am more clumsy. I get frustrated. And tonight, I realized that I am depressed.

The thing about MS is that you never "get used to it." Each "flare" is new. The symptoms are constantly changing. And it's so on and off--it will hit hard; I get better. It comes back. It's a vicious cycle.

Overwhelmed

No idea even where to begin. The home health nurse called today, since technically, I do qualify for them to come into my home to give me steroids since I was told I could not drive, due to my right leg's stiffness and weakness. We then decided that it might be more economically advantageous to try to get a ride to the hospital to get the steroids. So, I called my friend, who has been all too generous during this time, and asked her if she could give me a ride. I was going to try to get it at a doctor's office, because then the cost would be $30, versus meeting my deductible then 20% of the costs.

Then, I talk to B and he says his new insurance is taking effect on March 1. So, all of the insurance research done has been for nothing, because that insurance no longer applies. *sigh* This new insurance is a lot crappier. I go from having a $250 deductible to $1000 deductible. My out of pocket maximum went from $2000 to $4000. And there is a clause in my insurance details now for "infusion therapy" saying I must first meet my deductible ($1000), then it's 80/20. If I have to pay 20% of $8000 (which is what is billed for the medicine/supplies), I am left owing $1600 each time. I just don't have that. With my previous insurance, as long as I had it done at the doctor's office, I paid $30. Period.

Well, the nurse says I can't even get my steroids because I am sick with an upper respiratory infection or something of that nature. Steroids lower your immune system, thus making it harder to fight things off, meaning it's not wise to get steroids when already sick. She said to call my PCP, get antibiotics, get well, and then call her about steroids.

The nurse was very nice and understanding to my feeling utterly overwhelmed. She encouraged me to relax because stress would just wear me down more and is not good for MS.

I know there are options with drug companies for help, but they take time and energy and paperwork, etc. I just feel like I don't have the time or energy to deal with this. I hate all of the hoops you have to jump through when you are sick to make things work out.

More suckage

Something else that sucks--I have a doctor's appointment tomorrow. And I just thought, "Oh crap. My right leg is stiff. I hope I can drive!"

I miss living close to public transit. Because out here in the burbs there is no way for me to get to the doctor without driving. And no family lives close by.

If I can't drive, I am going to have to cancel/reschedule at the last minute and try to find a time for B to take off of work.

Relying on other people sucks.

Armed with Questions

The doctor fit me into the schedule for this week. He told them to overbook him, which I appreciate. I am going to see him tomorrow.

I have a few questions I want to ask. First of all, I am taking the article I cited yesterday with me to ask him his thoughts on it. Regardless of his thoughts, I am pretty convinced that I am being affected by whatever Tysabri did to folks in the study who were in a highly-active exacerbation. There is no explanation as to why one day I am getting Tysabri and the next day, my walking and balance is a lot more off; why I am getting weakness in my legs and back. I went from walking kind of slow to walking very slow, uneven, unbalanced, and contemplating a cane; it is not right.

I also want to ask him about steroid use and Tysabri. They do permit you to have IV steroids to treat an exacerbation during Tysabri. When I called their Touch Program and asked questions, I was told that they try to avoid anything that puts extra strain on the immune system. However, if a doctor sees IV steroids as the way to go, then he/she can prescribe them.

Steroids have their own risks--including hip necrosis and osteoporosis. My doc has told me that my size (to put it bluntly--I'm fat) is a positive factor in me avoiding osteoporosis. However, hip necrosis is still a risk. I've had steroids probably 4 or 5 times since April 2006, including my last round in July 2009. I don't want to use them again.

I also do not want to restart Tysabri in the middle of an exacerbation. The article talks about peoples EDSS (a disability scale) numbers getting worse after the exacerbation triggered by their Tysabri infusion. Yet, I am also scared to be on nothing at all. My MS has been aggressive in the relapse phase. I am remitting well, but I relapse a lot. And I've not been 100% since July 2009. Seven freaking months.

So, I am going in with lots of concerns and lots of questions. I trust my doctor, but I also trust my own ability to research as well as my instincts. There really is so much to consider.

I am trying to figure out what is going on. I found the following link: http://msj.sagepub.com/cgi/content/abstract/15/11/1359

We describe three patients suffering from a very active form of relapsing—remitting multiple sclerosis (MS), who experienced severe disease worsening, associated with a marked increase in brain inflammation, a few days after the first administration of natalizumab. In line with preclinical studies, our observations suggest that natalizumab, when administered during active disease phases, may worsen disease evolution possibly by modifying the regulatory network in the brain. We suggest that relapsing—remitting MS patients having had a recent relapse should be treated with natalizumab only after achieving complete clinical and radiological remission.

This describes me. I was in a relapse during my first Tysabri infusion last Tuesday. When I was on it a couple of years ago, I was *not* in a relapse. I was pretty stable. My only fear is that the doctor won't take me seriously. I told the nurse about it, when I called back to check in, and she didn't seem concerned with my research (or maybe she was overwhelmed with my flood of information) and asked questions about what was going on and said she'd pass it along to the doctor. Sometimes I don't feel I am able to articulate what is going on.

I am trying to get full-access to the article through my friend who is a doctor. I really hope they would give some credibility to this when it seems like it is exactly what is happening to me.

I feel at a loss. I don't want to be a drama queen, but I also don't want to screw around with something that could make me worse. I waited over the weekend to gauge how things were going to see if it was just a fluke. But it's not.

If I'm honest--I am concerned. And that's what I tried to express to the doctor. I hate bothering him, but I guess part of his job is dealing with my concerns. Right?

When do you need a cane? The other day when we were out, B said, "If you continue to be like this, you'll need a cane." I was shocked that he would suggest that.

I've been off, lately. When I get up for any amount of time, my legs get weak and my balance gets off. Turning corners is especially awkward. I thank God for walls.

I ran into a bookshelf, today, at home. No books are on it--just photos. And a tall statue sits on top. I caused it to tilt back and forth. Thankfully it didn't fall and I was able to steady it.

Part of me is like, "I don't need a cane. I'll just look foolish with one." As in, people will just think I am dramatic. The other part of me is like, "Do I need a cane? Am I in denial?" You always want to think you're not bad enough for that.

I mean no offense to people who use assistive devices with my reservations. I just don't want to get one if I don't need one. But don't want to be scared to get one, if that is what is best.

Decisions, decisions.

Tonight, we went to grab some dinner and to the grocery store.

I have no been up doing stuff all day--I've been pretty stationary working on some school work.

But I went all out gimpy. My gait was uneven--heavy back and forth on each leg, if that makes sense. I was swaying when standing, often grabbing the cart, etc. My legs seem to be in a constant locked-knee state when standing.

This is all sudden. B said it seemed to even get worse in the store. Granted, that could have been walking around agitating the problem, but the problem was still there from the beginning.

I have no idea why this came on so suddenly. Of course, I am thinking "Damn, I got Tysabri yesterday. How fast does it take to get PML?" It was my first infusion about 24 hours ago. Likely doesn't set in like that. But this has been scary, whatever the cause.

And no one give me a spiel of BS from the "fact sheet" from Biogen. I don't want to hear it.

B even said that if this lasts longer than a day, I should get a cane. And he said he was really worried. Must be bad for him to verbalize that, since no 29-year-old wants a wife with a cane, and he doesn't usually express things like that to me.

I'm worried. I am hoping it's a fluke for a day. But even for a day--the sudden shift has me concerned.