The One Where I Complain and Then Go On to Talk About MS Therapy Options More In-depth Then You Ever Wanted to Know

Note: I contained myself to two paragraphs of complaining. Skip the next two paragraphs and you will miss all of the self-pity.

I think I felt better today than any other day in a month, but I am really frustrated right now. I am exhausted and have been since 6:30 pm. It's like my body decides it's done and then that's it. I have trouble walking. I can't lift or cary things. Even my purse (shut up, it's not THAT heavy) or a drink is too heavy! Plus, if I continue to do even the most basic task (ie. walk, stand, fold laundry) it gets worse really quickly and I get dizzy. Oh yeah, and I get grumpy. Pooh! I really have been taking it easy. It's just the better I feel, the more I realize how far away from normal I still am. Before it was just a shock and I guess I felt like I was sick, but usually when you're sick you get better relatively quickly.

Plus, I'm having a hard time with missing out on things. My friends went out a couple of weekends ago and I knew I couldn't go with them. They had the best time and I missed out on all of their fun stories. I wanted to go tubing tomorrow, but I can't. I was trying to help Amanda cary chairs to her new classroom today. Everyone else can cary 4 at a time. I tried, but then had to put 2 down. It's embarrassing and it makes me feel weak. I'm trying to set up my classroom, but I can't do a lot of the stuff I need too. Jarrah and Melissa have always helped me set my room up, but this year I can't do it without them. I HATE that I can't do it. Grrr! Alright, I'm done now.

I am so lucky to have so much support from my family and friends. Jarrah and Melissa have been helping me work for a week now. Today when I told Jaclyn I couldn't go tubing, she decided to stay home and come over to my house to swim in the morning instead. For awhile I was too tired to do really anything. When I play Rock Band my left hand has a hard time. Lot's of my friends have come over and played Rock Band with whoever else was here while I just sat on the couch. I think it was kind of awkward for them. They always want to help me with something. However, I really appreciated things being like they usually are, even if I can't participate. I still have way too much thinking time, but I am getting better about filling that time with other things.

Therese went with me to my neurologist appointment yesterday. She is an excellent note-taker. Plus I had questions written down for Dr. Granger and she reminded me of them when I forgot to ask. He basically said that I'm borderline and can't be diagnosed with clinical MS at this time. He said whether or not I go on a therapy will be a personal decision.

The pro's are, both kinds of therapies statistically reduce attacks by 35% a year and brain lesion activity by 75% a year. Plus, studies show that the earlier you start a therapy the slower your disability progresses. They say it also delays the clinical MS diagnosis because it delays another attack (which is good). He gave me a lot of info on the two therapies I qualify for. He said he has almost 600 patients with MS. A couple hundred are on Avonex, a couple hundred are on Copaxone, and 42 are on Trosoverin (a harsh chemo related drug which I do not qualify for). That leaves around 100 that have chosen not to have any therapy at this time. He said if I have another attack I won't have a choice. Another pro is people who are untreated have to have an MRI every 6 months. If I am on a therapy I have to have one every year for 2 years (after my next one in 3-6 months to see if these lesions have gone away), then only when I have symptoms.

The con's are, therapy means I have to give myself shots. Weird! Plus, we can't rule out that I might have that other disease that I can't pronounce (it's not whatever I said it was before, but it sounds like that, lol), which is a one time virus that attacks your brain and then goes away. I will have to ask Therese if she remembers, but I think he said 85% (it could be 80% or 90%, I can't remember) of people with lesions like mine have MS.

The two drugs work differently in your brain:

Avonex (interferon beta-1a)- Only 3 shots a week, but most people experience mild flu-like side effects. Plus, a small group of people get a severe liver problem from it, so I would have to have my liver tested regularly for a year. It is also linked with depression and sadness.

Copaxone (glatiramer acetate)- No side effects, but you have to have a shot every day.

I'm not done researching yet, but right now I think I want to start a therapy. There are several reasons. 1) Every personal story and clinical research I have read so far says the sooner you start a treatment the better. 2) My doctor said I have mild MS and a lot of the research I have done explains crazy (and painful) symptoms. My MS sucks! I am willing to give myself a shot everyday to keep the "mild" form I have. 3) I don't personally know anyone who has MS, but my Aunt Linda's best friend and Amy K.'s neighbor both do and both Linda and Amy told me they said they take a shot everyday and never feel like they have MS. Both have been symptom free for years. I will keep researching and praying about it. I still can't start a therapy until I'm done with this attack. I see my neurologist again in a month.

Dr. Granger said when you have an attack it goes away on it's own with or without treatment. He made me have the solu-medrol transfusions because it has been clinically proven to prevent another attack for 3-12 months. That gives us a window of opportunity to talk about therapy and get started. He said because I still have my symptoms I probably had the treatment too late in my attack, but that it will still go away on it's own. He also said that he has patients who refuse to do the solu-medrol again and he doesn't make them.

I learned something new during this visit. Our t-cells (immune system) regenerate every 3 months. We have lots of them. When mine regenerate, some of them have MS and some don't. I think that I only get lesions when a certain percentage at any given time have MS. Basically I have to have enough to cause damage. There is a new drug on the fast-track for approval by the FDA that kills all of the t-cells in your body. You have no immune system for 3 months. It is actually being approved for cancer patients, but clinical studies have shown it to be a cure for MS. When the t-cells regenerate, 90% of MS patients have no trace of MS. Crazy, huh! That would mean a cure for MS. Obviously there is no long term data, but Dr. Granger is very interested in the research.

I know that I have bored you to death, but you can see all of the information I have to read and the decisions I have to make. It really helps me to write about it. Plus, I can get all of your opinions. Thanks for reading my blog. I think everyone is scared to comment on my blog because they know I am a pretty private person and because most of you text or FB message me about it. A lot of you have also asked me if you can tell so-and-so, who's not on FB and doesn't know yet. I have gotten so much out of writing about everything and talking to all of you. When I start to get self-conscious I think about how all of your support has helped me and I realize how much I need it. If it's on the blog, it's fair game. Goodnight! I need to be well-rested so I can swim with Jac in the morning!