August 5, 2011

I Have a Plan

At my appointment today, it was confirmed without a doubt, that I do, indeed, have Multiple Sclerosis.

I think it was the fact that I had oligonclonal bands in my cerebral spine fluid (CSF) and not in my blood serum that did it, because everything up to this point, has been probable MS.

But the results from my spinal, plus the images from the MRI’s, along with my medical history, has made it OFFICIAL.

I’ve spent the last few weeks sorting through information. Because of the nature of auto-immune diseases, and because every patient is different, it’s difficult to find the answers to the particular questions that I have had, because I need to understand EXACTLY what is happening in my body.

I need to have the information, and I need to take notes, and then I have to go home, and think about things. Then I have to go to the library, and do some research, and think about more things. Then I have to sleep on it and talk to my doctor again, and think some more.

I’ve decided that the most important thing for me to do right now is to make a personal journal that records all of the minute details. I’ll be starting my medications soon, more on that later, and I need to know HOW I took them, what were my reactions, what my body temp was…  I have to know what I ate, what kind of exercise I did, what symptoms I am currently having, and more. I have to keep record of all of these things, so that I can find what triggers an attack for me.

The first medication I’m going to try is called Rebif.  DadGuy and I have been discussing what days and times I want to do my injections, because it’s something that I have to take three times a week, with at least 48 hours between doses, but could potentially leave me feeling like I have the flu for up to 36 hours. So, do I take it Monday morning, and have a bad Monday and Monday night? Or do I take it Monday night and have a bad Tuesday?  This decision is so dumb, but it comes down to the weekends. Do I want to be sick on Saturday, or not? I’m leaning towards doing injections in the morning, because with all the other limitations I have right now, I just don’t think it’s fair to my family to take the one day that we all have together, and choose to be sick.  I’d much rather not feel well while people are at school and work, so I can lay on the couch pathetically ALONE.

I also get to have a field nurse come to my house and give me proper training on how to administer my injections. Of course, the injections are also going to make me change the times that I take my other medications, because some have to be taken with food, and others have to be taken on an empty stomach. And I don’t want to take the chance of taking any of them too close to one another, because IF the injections make me as sick as they say they will (gets better after a few months) then I don’t want to take the chance of barfing up half of a digested pill.


I almost feel like I’m in body boot camp.

I’m sure that people will tell me that it’s unnecessary, and that I’m taking things a little too seriously, but I want to have a CONTROL group. So between now, and my next MRI, I want to see if I have a pattern. I want to see if certain foods make me worse, or better. I want to see if there is weather I should avoid, or certain exercises that help, or even just what the best time to go to bed is.

SO. That is the plan thus far. Of course, I am still waiting on other diagnostic tests to find out if I have any more fun diseases lying in wait, but until then, this is my decision.

And I feel really, really good about it.

AND: for those of you who like to compare, like I do, or are going through the same thing, I know you’re there and your emails me the world to me, here are some of the latest lab results. (don’t pretend you’re not interested)

Test Name Result Limits/Reference
ANA Titer 1:1280 <1:40
IgG, Quant, CSF 13.3 0.0 – 8.6 mg/dL
IgG, Syn Rate, CSF 53.4 -9.9 – +3.3  mg/day
CSF IgG Index 3.4 0.0 – 0.7
IgG/Alb Ratio, CSF 0.89 0.00 – 0.25
Nucleated Cell, CSF 34 0 – 5 cells/uL
Lymps, CSF 97 40 –80  %