Not being from Boston, I didn’t realize that Beth Israel used to be a pretty bad hospital. My first experience with them was when I started seeing a primary care doctor at Fenway Community Health.  What I love about the BIDMC system is that all of my doctors have access to the same information. My surgeon was able to see the notes of my visit with the neurologist. The neurologist was able to see the results of my visit with the optometrist. This is all really cool stuff.

Until today.

Today was my pre-surgery interview with a nurse in the anesthesiology group (who never gave me her name, just “one of the nurses”) and she had no clue of my medical history nor medications. One of the things that every doctor has done is gone over my list of medications to ensure that it’s absolutely current, including the vitamins I take. My neurologist (who I absolutely adore) tells me that it’s a big push for the hospital to ensure that every patient’s list of medications is current. So when “one of the nurses” is doing the pre-op interview, not only did she ask what medications I was taking and what special needs I had, she was totally missing out on a valuable resource that was probably right at her fingertips. Now I understand the need for her to ask what medication I’m on, but wouldn’t it have been easier for her to ask if I was still taking Strattera 25mg twice a day and 44mcg of Rebif three times a week instead of asking me to list all of the medications I currently take? She was surprised when I told her that I had multiple sclerosis. What? It’s been part of every discussion with every doctor at every visit. Even a cursory look at my medical records should have indicated that to her.

I’ve really had a great experience with BIDMC and I’m hoping this one situation doesn’t drag down my opinion of the entire system.

If you haven’t sponsored me for the MS Walk yet, you can do so here.

I’m registered to walk for the 2008 MS Walk. You can sponsor me by clicking here.

I attempted to give blood this morning. Now that I’m no longer on my MS meds, we thought I might be able to give. Nope. I’m still permanently deferred by the MGH Blood Bank.

Have I mentioned lately that my boss is a really good guy? I went into him this morning and told him that I was having some health issues. My MS is acting up again. It’s the change in the seasons, I swear.  His first question was “Do you need to work from home for a while?” I told him that I have a lot of work to do, and that the work will get done.

When I get like this, my sleep patterns get all messed up because I get tired and want to nap during the day. We agreed that I’m going to cut my hours physically in the office a little short for a while. I’ll still work, but I’ll probably come in a little later and leave a little earlier.

As far as the mechanics of what’s going on, it’s numbness, loss of balance, and being tired all the time. These are classic signs of a relapse, at least in my own case. Hopefully this won’t last too long. I have a life to live. The good news is that having Reggie forces me to stay active. We probably walk a good mile every day. That forces me to get at least a little bit of exercise.

It was about this time five years ago that I first started noticing the symptoms that would lead to my diagnosis of having MS.

My neurologist in Pittsburgh was good. My neurologist here in Boston is better. The neurologist in Pittsburgh assumed that I had relapsing-remitting MS. That’s perfectly reasonable. For four years, I thought that I was having ups and downs in my MS. My new neurologist told me that my profile was more like transitional-progressive MS. It means my symptoms won’t come and go. Instead my symptoms can be expected to be progressive instead of up and down.

It makes me wonder if all of the ups and downs I’ve faced over the past few years really were the MS or if it was something else. I can’t exclude that it could have been in my head.

Now I’m trying to do some research on TP MS. It’s really rare to find any references to it other than things that are cursory.

My neurologist just called me. That’s right, she called at 8:00 PM on a Friday night. She was just returning my call from earlier today.

My bloodwork is back. The good news is that my vitamin B12 levels are higher than before, although slightly low. Normal is 240-900, and mine was 230. She says we should monitor it and not start replacement therapy. She also cleared me to stop taking my Rebif.

For the first time in four years, I’m on no injection therapies. None.

This is a happy day for me.

I went to see my neurologist this morning. She’s awesome. One of the things we talked about is the fact that my liver doesn’t appearing to be functioning properly. It explains why I’m B12 deficient. Before anything else, she ordered another set of bloodwork to confirm her suspicions. If the bloodwork comes back as expected, I’ll be coming off the Rebif. That’s three injections a week I won’t need to deal with. Obviously, this makes me very happy. But there is a catch. I’ll also be starting B12 injections. That means an intial week where I have injections three times that week. After that, it’s a monthly injection. I can handle this. The problem is that it’s an intramuscular injection. While I’m not thrilled about this, it will hopefully get me over this “always tired” thing.

I need to wait a few days before the bloodwork comes back. Then we’ll know for sure.

My neurologist’s office called today. They had a cancellation and wanted to know if I could come in Monday at 9:00. Considering my appointment is in early October, I jumped at the chance. There are three things I want to discuss/do with her.

1) Lets do the bloodwork and see if I really am vitamin B12 deficient. That might explain why I’m always tired.
2) Does she think that taking me off Rebif is the right thing to do. If she wants to try that, I’m totally okay with not stabbing myself with a sharp object three times a week. I do have another month’s supply of meds, so refilling that prescription is not a big deal.
3) What is the right amount/type of exercise for me to be doing? I’m really unhappy with my body right now and want to start hitting the gym more.
4) Am I due for another MRI?

An MS diagnosis can be a shock. When I was first diagnosed, I was afraid to do anything. In fact, these are my own words from four years ago.

I can’t over-exert myself. I shouldn’t put on any more weight. I have to be more careful in some situations because I have a lack of balance at times and might fall.

Looking back, that over-caution was a mistake. This is not the time of my life to stop living. If anything, this is the time of my life where I should be doing everything that I might not be able to do in the future. I know that my body isn’t going to allow me to climb the Sydney Harbor Bridge again when I’m in my 40s. If I want to do that, I need to do it now.

My advice to people recently diagnosed with MS is this: Don’t worry about the impact now. Keep living. If you’re not living now, it’s time to start.