Waiting Game

Okay, I did it, you will be proud if you know me well... I finally looked up MS and read all about it. I have been waking up early for some reason every morning and if I make any big moves it wakes Aaron up. So I've been trying to stay still in bed and just do things from there, so I don't wake him. He is really tired right now. I am pretty sure it is a mix of many things, but mainly just exhaustion from our long week. They do say exhaustion is a symptom of MS, and that he needs to take it easy. That may be a hard one for him to learn to do. Anyways, since I was stuck in bed, I finally looked up the MS society website and dove into the literature. Some of it was comforting, some of it was a little scary and most of it was informative. I really should have looked at it all before we saw the Neurologist. All of the tests he gave, blood work and even brain scan he showed makes so much more sense. I'll try to explain what I learned in a minute.

But, it gave me some direction of what we need to know next. There are 4 types of MS you can have. I think of them more as stages, because you can transition to a new stage if you aren't taking care of MS and it starts to progress more. I may be wrong, but that is what I understood. Here is a summary of the 4 stages:

• Relapsing-Remitting MS
  People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.
• Primary-Progressive MS
  This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS.
• Secondary-Progressive MS 
  Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition.
• Progressive-Relapsing MS
  In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.

As you see above our hope is that he has RRMS, Relapsing Remitting MS. Which means it is totally manageable and easy to live with. They say most of these MS patients live just as long as most others and are pretty healthy. They obviously need to take care of themselves with medication, good healthy diet and other things, but they live normally!!! The other ones, are  little different. I hope to never even have to bring them up. We are hoping and praying now that we find him to be RRMS.

My fears? Well, here it goes... As I studied it talked about how hard it is to diagnosis MS. They have to look at many things, brain scans, blood work, symptoms and how many re-occurances. What that means is some people have scars on their brain, especially older people. So just looking at Brain MRI's don't usually tell you that some one has MS. It can be other diseases or due to old age. But, when someone young like Aaron comes in and their scan shows the scars and shows that some are not recent and some are, it shows re-occurances, which means, it comes and goes and has happened times before. Which is a huge indicator of MS. Most times that is hard to see at first in newly diagnosed MS patients, because they usually catch it on the first occurance, thus they don't have evidence yet of re-occurances. So then they have to rely on ruling out all other diseases through blood work, more scans, symptom watch and other things. But, they all knew pretty fast on Aaron. That could definitely be a blessing in the fact that we can start treatments and not go through all the waiting. But, it also means it has been around for awhile and we could have been treating it sooner. They still took his blood this week to double check it isn't something else. But, the neurologist showed us the different ages of scars and proved he has had more than 1 episode. Anyways, it is making a lot more sense now. Why they do the tests they do, what he was talking about with the new and old scarring and why they are pretty sure he has MS.

What next? We are in a waiting game. As I said in the post before, they told me they could not see Aaron until mid August with the specialist. We could go back and see a Neurologist, but Aaron and I feel strongly to get the results and have the care he really needs we need to get in with this specialist. I emailed the ER doctor we had this week on Friday afternoon after I got the run around from the specialist offices secretary. It old him of fears and worries about waiting and asked his advice. He almost instantly emailed back. He told us to not worry. The specialist Dr. Foley is out of town, but he would be in contact as soon as he could and would email and then talk to him personally. That brought us a lot of relief. We are lucky to know a few other Doctors/Radiologists who also offered to help get us in faster. So we have a huge support system, but it is still a waiting game.

In the mean time, we are trying to just wait, live as normal as we can and keep Aaron healthy. I am making him sleep more, eat healthier and do less. That is very hard if you know Aaron. But, he isn't fighting me as much, since I think he realizes he needs it and it helps. His speech is getting much better, his face isn't sagging as much. I have noticed he is getting fatigued easier, and is fighting off some emotions that are hard to deal with. These are both huge symptoms and we are hoping he can swing back to him old self eventually.

What can you do? (I keep getting asked that.) Pray, pray for Aaron. Pray he can get stronger, happier and that we can get in to this Doctor ASAP. My cousin a Radiologist said we need to get in soon, so pray he does. Pray we can find a medication that will work well with him and his life. Most are injections and the symptoms are hard to deal with. So let's hope that we can get him something he can take orally, that won't make him sick! Pray that he has the RRMS and that it isn't the progressive kind. Other than that, we really are doing better. Things have sunk in, we are ready to face and fight these horrible disease!

Thanks to all who have cared and supported us. We feel so loved and blessed.