Thursday, February 7, 2008


I'm waiting for my second opinion. The first doctor was ok, but his nurse was pretty awful. I found out from them that I have active lesions and a lot of them in my brain and along my spine. He suggested starting on the "disease modifying drugs" as soon as possible. But I decided to wait for my second opinion and to give me time to figure out what to do about breastfeeding. So I've been researching, talking to lactation people, my family doc and we'll also talk to Xander's doctors.

Dr. Reed said that the active lesions suggested to him that "something big was coming" he was kind of surprised that I was doing as well as I was. So he also said that maybe I would keep being fine. This is a very frustrating disease!

So I wait until my appointment, February 14. I've talked to the coordinator who said usually it's not so busy and there is a nurse who you can get into see quickly once you are an established patient. She described the nurse as a real sweetheart--which is pretty much the opposite of the first nurse I saw. I think I'll be starting on drugs, I'm guessing betaseron or copaxone. I've been trying to learn a little about each one. Betaseron is an injection every other day and copaxone is everyday. I kind of like the idea of everyday because you can't forget as much also copaxone doesn't have "flu like symptoms" as a side-effect. My dad has been on betaseron for over 10 years and has had few problems. It's stronger and works faster than copaxone so because of all the active lesions maybe it would be a better choice for me.

Both of them aren't cures they don't treat the "attacks" or "episodes" like I had over Christmas. They supposedly lesson your chances of having episodes and keep new lesions from forming so that hopefully you won't become disabled by the disease. Funny that I can use that word here and not when talking about Xander. I guess here it is a possible future that I'm hoping to avoid. with Xander, he's my baby and in the present. I haven't officially been diagnosed with a "type" of ms and may have to have a spinal before even getting an official ms diagnosis. (the spinal tap rules out other diseases that might possibly be causing lesions and it also shows if there are proteins (or some other thing) that have crossed into the spinal fluid that are another positive sign of ms. the spinal tap, plus mri, plus history/symptoms can give a positive ms diagnosis). I'm guessing I have relaxing/remitting ms which means symptoms come and go. this type often eventually becomes progressive where the symptoms don't go away and new ones keep coming. At least this is how I understand things and why I need to get on these drugs so that my body attacking nerve connector thingys and parts of my brain will stop. The damage that has been done can't be undone but the hope is to prevent new stuff.

1 comment:

thepowerguides said...

Hi Kelly,

My wife and I have just gone through the process last year ( wife diagnosed with MS ) , it was scary and very difficult to deal with but the only thing I can say is you will adapt your life to living with it , yes I would be a liar if I told you everything is fine and dandy "it's not" but you can and will adapt and there is a great group of bloggers on line who help share with each other .
my wifes blog is and you will find some great other bloggers who suffer with MS , best of luck steve