Well it has been 8 months since my first campath infusion.
I actually have been feeling pretty good lately. I can't say it's a miracle drug or that it has repaired any damage so far. Although, some days my eyesight seems a bit better.
My general energy level is really pretty good and I seem to be able to manage my symptoms better. I think part of that is that I have just learned to realize my limitations more.
Although I generally feel better, some of my symptoms seem to have gotten a little worse. I have daily numbness now, where as it used to be only weekly. Also my bladder seems weaker.
I also think the results of the study are over exaggerated. I am pretty sure I have had a least one flare up since the study started, but my doctors refuse to call things flare ups now. If I report one, they have a really old doctor come in and retest me. At the time I was having what I thought as a flare up, I definitely was walking worse. However, the doctor said my scores were higher, so they called it an "unconfirmed" flare up. I think the test are bogus and don't accurately provide information on my progress. My only hope is that they are being as strict on the rebif side, and being just as hesitant to call things flare ups.
This being said , I really believe that the Campath has increased my quality of life. I am glad that I made the decision to participate in the study, although it has been a hard road to travel at times.
I am worried about the next infusion in four months. I guess most people developed the graves disease after their second infusion. And although the memory of how awful it was is slowly fading, I still know it is going to suck. I am hoping that I will know what to expect more in the second infusion and that my body will handle it better.
I still have not been able to drop the 10lbs I gained 8 months ago as a result of the infusion. But maybe that is just because I am getting older. Also my hair never really recovered from the damage the Campath seemed to cause ( severe dryness and brittle).
However, the aforementioned seems like a small price to pay in regards to a having a better quality of life. The monthly blood draws are really annoying, as are the 3 month "in house" testing we have to do. I am tired of feeling like a lab rat, although everyone in the doctor's office does their best to make it an enjoyable experience.
I am frightened of how much hope people are putting into this drug. I think it is a good step in the right direction, but no miracle cure. Newly diagnosed people seem desperate to get on this drug and I think they expect too much.
I think there is a fine line you must walk when you have MS. On one hand you have to have hope, keep a good outlook, and always be pro-active about trying to find what works the best for you. However on the other hand, I think people need to accept their diagnosis and prepare to take the steps needed to accommodate their lifestyles as their disease progresses. I see too many people who are in denial about their disease , and refuse to make the changes needed in order to make their lives easier. I think that attitude in itself adds more stress to their lives, which only worsens the disease.
I am planning on making a documentary about my life since my diagnosis as well as the lives of the five people I know who also have MS.
I wish the general population was better educated about MS. I hate having to explain the disease every time i tell someone new about it. Even some of my general doctors don't know the specifics. I hate having to explain my heat sensitivity to people who think I am making it up and being a primadonna. I even have to bring books to educate my friends who think I have a bladder infection because I use the ladies room so often. It makes things very frustrating having to deal with my own symptoms while educating everyone around me constantly.
well that was more of a rant than an update.
I hope everyone is enjoying a relief from the heat , I know I am