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, February 15, 2011

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.

Sunday, February 06, 2011

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.