The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Tuesday, January 30, 2007

I'm waiting to hear back from my nurse, so I can set up an appointment to go over the results. I called her on Friday. If I don't hear back from her today, I will try tomorrow. I am just terribly busy.

Other than that, I have had headaches three days in a row. I have had to take migraine medicine three days in a row. I tried an Aleve, but it didn't help. The headache only got worse. I am not sure why this is starting up again, after I had gone a couple of weeks without headaches, but it's getting annoying. It may not be MS-related; it could just be stress, but well, I have too much to do to tend to silly headaches.

I forgot to take my steroids yesterday. I put them in my school bag to take once I ate my breakfast and just totally spaced it. So I called the pharmacist to see where in the series I should start. No steroids and still a hungry hippo. Argh. Only a couple more days of them. I'll be glad to have them behind me.

Saturday, January 27, 2007

Do I really have a reader from South Africa reading this thing? If so, awesome. Feel free to identify yourself and say hello--and any other lurkers out there.

I received my MRI CDs in the mail after a long ordeal with the post office, which I am too tired and pissed to rehash. Let's just say, the mail carrier put a card that said "Sorry we missed you" in my mailbox while I was sitting at home. He did not "buzz" me. When I tracked him down for the package, he said he didn't even have it with him; it was at the post office.

I was a bit disappointed in my ability to read the MRI results--both the images and the transcription. After some frustrated attempts, I got the following out of it. The MRI in March had several (innumerable) spots which are mostly gone. There is noticeably decreased activity in those areas. However, there are two new spots (it said small) in the frontal lobe and near the optic nerve. :shrug: If they're small, does it matter? My husband was trying to look at the images and was like, "Wow, they look so much better." I was frustrated because it seemed confusing, in light of what the neuro said. Then again, he is not a neuro and neither am I, which was so evident. My doctor-friend is suppose to interpret the transcription for me. But I also have a plan.

I want to meet with my current neuro to go over the results, so he can show me what on the MRI I am looking at, etc. I am then going to take my results to another doctor to talk about treatment options. Is Tysabri the best/only choice for me? Since I have only tried Rebif and nothing else, is it possible that something else would work? After this second opinion, I am going to meet again with my neuro to discuss where we go next.

I have been having some night sweat issues, at least that is what I think they are. I have no idea if it's related to the steroid taper I am on or what. One night, it felt like I wet the bed--though I didn't! This morning, the sheets were damp. I don't understand. Maybe when/if the nurse calls me on Monday I will try to mention it. I have all of these concerns, so I hope I am not bugging them to pieces.

I had my first headache today in a while. I was waking up with them, but they had gotten better for a couple of weeks. Today's developed mid-day which is rare. An imitrex later, and it is mostly knocked out.

Otherwise, I feel tired and achy. Could just be I need more sleep (we caught a late movie last night--Pan's Labyrinth is great, by the way). Maybe I am stressed--I have papers due by Feb. 1 from last semester. Maybe it's just general fatigue. I really don't know. Hopefully tomorrow I feel better.

Tuesday, January 23, 2007

Some updated notes:

  • The 'roid rage has set in and I am an emotional wreck. I get really angry and cry easily too. I am trying to manage it though. Last night, I slept for about 4 hours, which I had been doing much better (unlike the first time I was on IVSM/taper). I hope this doesn't persist.
  • I got my Tysabri information in the mail yesterday. Let's just say the info is slim and it's basically what I can access online. The forms cannot be filled out until I am in the doctor's office. I am waiting on my MRIs so I can see another doctor. Yet, I still have lots of questions about why me and Tysabri? I am so "ms-lite" in a sense, particularly compared to those others I know with MS. But perhaps I won't stay MS-lite if I continue to progress. Really, I don't know.
  • The information that was recently left on Tysabri in my comments section was helpful, but if you read this again, a question--are you just a big fan/advocate for Tysabri or are you employed by the company to promote it? Because you are really enthusiastic about it, which is great that it's working for you. I just don't think there is one miracle drug out there right now. I do appreciate your input, though--let that not be misunderstood!
  • My neuro called on Friday (I don't think I've written about this yet and I am too lazy to check) saying he was suppose to call me to answer questions I had. Uh, I didn't recall that, but I always have something I can ask. Again, he promoted the Tysabri option as one of my few, if not only, option right now. He seemed pretty certain--not even tentative. On one hand, I am glad he wants to march forward. On the other hand, in the world of MS, I am not sure there is ever such certainty, so such certainty makes me nervous.
  • I get frustrated with everyone else who just doesn't "get it." I know this is a common issue and I am not alone. I was recently sent an article about how parasites in the water of some third world countries can help combat MS. I have been sent things about aspartame poisoning, supplements that have cured myriads of diseases, and told that if I would have only had more Vitamin B-12 as a child... People who saw me over the holidays have trouble grasping that I seemed fine and why now is the problem reoccurring. Someone else told me that once I started the Rebif, they thought it was all under control and that I would have it behind me. It has been reduced to "eye issues" and "leg issues," etc. I know it's hard to expect people to understand when I, myself, don't fully always get it. But as I live it and experience it, I don't have any real option except to understand or at least try to understand.
  • I had a bone density test and a hip x-ray just to make sure my bones are holding up in spite of the steroid treatments. I am still waiting for my results, but I don't foresee any problems. These tests were purely preventative and to establish my baseline so I can monitor these things.
That's about all, I think. Just a lot of craziness that seemed to all ball up at once. Fun times, oy.

Friday, January 19, 2007

Thanks for everyone's concern in what's going on (except Roger's Market--dang comment-marketers!)

I completed 5-days of IVSM (outpatient, going in once a day). I am now on a 10-day taper dose of prednisone. My mood sucks. While I am not the calmest person and can have a temper, I find myself boiling mad--with my husband, drivers, people at the grocery store, etc. I understand this can be a side effect, and I am not using it as an excuse; just trying to manage it. So, I am using my Ativan (usually for anxiety) to manage that.

I don't think I have optic neuritis, per se. But I was having double vision and now feel kind of out-of-focus. I got so frustrated while grocery shopping last night (which doesn't help the mood swings) because to read things was difficult. My husband said the wrong thing to me when I said, "I can't see!" He said, "Then do something about it!" I screamed, "I CAN'T do anything about it." He finally got it, but I think that is what makes it frustrating, that it isn't as simple as going and getting a new RX for my contacts.

As for switching to Tysabri. I know it is a huge decision, one I am not taking lightly. I am having my MRIs mailed to me and will likely see another doctor to look over them. The nurse was encouraging about this, but also warned me that it could become confusing, seeing as I could visit 5 doctors and get 5 opinions.

The risks of Tysabri don't freak me out, really. My questions revolve around how long is Tysabri for? My doc mentioned short-term, maybe a year, but this sounds atypical. How long does it have to flush out of my body before I say...start a family. There's no big rush on that one, but I want to make sure it's not like waiting two more years to even talk about it, after stopping. Also, regarding the other drugs, I want to ask about if the other CRABS would be more effective. I mentioned Copaxone, and was told no, since it's not an interferon (hence, why I thought it might be more fruitful). My understanding is that Avonex and Rebif (which I am on now) are the same interferons, so I don't know how much of a switch we would see.

So, as I said, I have a lot of questions, and it's not like I am starting the big T tomorrow, or next week, for that matter.

Today, I am going to my family doctor to talk about bone density. I don't think I am having any issues, but I know a few people lately whose bones have had adverse reactions to steroids--and not tons and tons of them, but to an IVSM treatment or two. Osteopeania, osteoporosis, and AVN (dead bones). Since I have had steroids twice in 10 months, I want to make sure we are keeping an eye on this.

So, that's all for the update. Today, I am on day two of the prednisone taper. I am trying not to be Miss Piggy, realizing that all the food in the world will not make me feel less hungry. And I have yogurt, apples, strawberries, etc to hopefully help along the way. (But wouldn't pizza taste so much better?!)

Thanks again all.

Friday, January 12, 2007

My neuro called me today, thankfully. He said that my old lesions look to be cleared up for the most part, whatever that means. I think that means the activity in them has mostly subsided. They aren't perfectly cleared up, but mostly.

The downside is two new lesions that are there--in my frontal lobe and near my optic nerve. I had a bit trouble understanding him as he talks quickly and is from Tunisia so a language barrier/accent is hard to discern over the phone, but this likely is affecting my double vision.

So, he said this is not what we want to see from being on Rebif for 8 months. So, he said he wants me to start on Tysabri. He is mailing me information and then we will sit and talk about it. I assured him I have lots of questions.

About a week ago, I as A-OK. Then BOOM! All of this crap is developing. I had such faith in Rebif. Maybe I am too optimistic?

So, a couple of questions for some of you more seasoned people, or maybe not-so-seasoned people:
1. What questions should I ask him about Tysabri or the potential of me starting Tysabri? I know there is a risk of PML. Any other things I should ask about or consider?

2. How is a lesion on the frontal lobe affecting me? Any info? Or is there a site that says: If you have a lesion on your____ you will be affected with _____. If I read correctly, it might cause cognitive issues? (which since I am a PhD student, I cannot afford this; my brain is my career and one of the few things I have going for me!) Oh, I also see that depending on where in my frontal lobe the lesion is, it be causing motor problems. Maybe this is my foot-drop when I walk and get fatigued or the jumping in my legs? Better that than my brain!

Tuesday, January 09, 2007

So, as I've posted yesterday that I have had hypersensitivity and vision issues. The nurse just called me back, and the doctor wants to do IV steroids.

I have only had these once--in April 2006. At that time, I welcomed them. I could barely walk; I'd hobble along, holding onto walls. My balance was also terrible. Compared to that, this seems so minor. I think it's just a different manifestation of MS--perhaps lesions on a different part of the brain. I questioned this, and the nurse said that when she wrote everything out (she read it to me) this is what he suggested.

He also ordered a brain MRI. I asked about a spinal cord MRI, but she said he just wanted one of the brain. He wants to see if Rebif is working for me, as he is considering this the second episode within less than a year (I have been on Rebif since May). If there are new lesions, they mentioned the big T-word--Tysabri. That seems far off and a huge decision to boot.

It's weird how things unfold so quickly. I just wanted to call and let them know things so they could put them in my chart. I didn't expect steroids, an MRI, and discussion of the possibility of Tysabri.

Today is a real reality check. But maybe I am living in denial. I feel overall "good" minus these physical annoyances. All of this medical stuff seems a bit dramatic to me. I'm MS-lite--remember?

Monday, January 08, 2007

MS is still very new to me. I mean, April will mark one year, but it takes time to see the course of this crazy disease. Heck, I don't know if even long-time MS'ers can know what to expect. Physically, I feel fine. But I am having some weird issues and have a call into my neuro about them.

The big thing is that for three days, I have double vision in the morning. It clears up about 30 minutes to an hour of being awake. But when I look in the mirror, I have four eyes! Once the double vision goes away, my eyes have a bit harder time coming into focus during the day, but I am typically able to see just fine. My skin is also really sensitive. I don't like to be touched. It doesn't hurt like some MS'ers experience. It's just uncomfortable and uber sensitive. My spasticity is acting up, too. My legs jump more frequently and with a bit greater force. Again, it's not excruciating pain, but it has moved from annoying to slightly more uncomfortable. I have these pricks on my side, stomach, legs, and groin area. They often are accompanied by my leg jumping. This happens when I am sitting down or laying down. Something else I have noticed is my left foot drags sometimes, especially when I walk a distance (which I do nearly every day). I have to be very conscious to lift it so that it doesn't catch on the asphalt. Today, I nearly fell. I just feel gimpy, overall.

So I talked to the MS nurse and she assured me that it was okay for me to call. I don't want them to think I am paranoid or just bugging them to death. But since this is new and since MS has a wide range of symptoms, I want to know is this MS or something else? A lot of what I am experiencing could be MS, and the doctor may want to see me. Hopefully the nurse calls me tomorrow to tell me one way or another.

Aside form these annoyances, I feel physically good. I am going to start working out as I am terribly out of shape. I notice this as I am too easily winded when walking several blocks. I like to sleep (like until 10 am on weekends and struggle to get up around 8:45 during the week!). Not sure if I really am needing the rest or if I am just lazy.

Just wanted to update all of you. As I have said before, if you are interested, there is a link in the side bar to my "normal" blog. I try to update it more regularly and it's not just health-related. I try to keep all of the MS stuff on here.