Answers

Yesterday we finally were able to get a clear idea about Aaron's disease and start planning our next step. Though some of the things discussed at the Doctor weren't easy, we left feeling like we were on cloud 9...we finally have a direction and hope for Aaron's health.

The past two days have been a whirlwind, tiring and hard, but in hind sight, they have been really informative and good.

Yesterday, around 12:30 we headed into the Specialists office. After about a half hour of paper work and another 20 minutes of waiting we were lead back to a room. In there the nurse took Aaron's vitals and then we waited some more. It was amazing though how this time around we were so calm. It was so comforting to just know we were there and that we were finally going to talk to someone who really could help!

After a little while the PA came in. She was kind older women who knew her stuff. She started at the beginning. She had all our recent events from the ER to nuerologist written down already. I was amazed at how well the hospital/nuerologist had recorded our experience thus far. It saved the PA some time. Anyways, we went through every symptom and experience we could recall these past few years that might have been a sign, symptom or episode Aaron had. She recorded everything. She then examined him, and asked many more very thorough questions. I was amazed how long she spent talking, questioning, and examining. I believe it was over an hour. It was so comforting that she was looking at it from every aspect. We actually started to realize that there have been a lot more episodes or symptoms that Aaron had these past few years that most likely were flare ups from MS. The more we talked the more we learned and discovered. She was very good at explaining why she asked certain question and how those questions could link things to MS. I was very impressed. It was already a night and day experience from the nuerologist.

After a long chat, and she finished the exam she went to meet with the doctor. They discussed things for awhile I suppose. About 20 minutes later Dr. Foley came in. He was the jolliest and kindest man. He was very kind and very on top of it... we were impressed! He definitely knows his stuff. He began by asking a few background questions, but seemed to have a pretty good idea already from what his PA had told him about Aaron's case. He asked who had referred us to him and we told him Dr. Hasleton. He was like, "Yes, he called me that very day you were in the ER. I'm sorry I've been out of town and that we are just meeting!" We knew Dr. Hasleton had had our backs all this time!

Anyways, he started with bringing up the brain scans. He reviewed them once again. We were a little more prepared this time to see them and hear what he had to say. I don't really want to go into the details of it all. I will just say it was hard to see and hear. But, we aren't going to focus on that, because it is what it is... it is done and we are moving forward now. After that he mentioned the rare case that Aaron was. He had no hereditary link to MS, his symptoms are a lot less common than some MS patients, and he was testing positive in his blood work to another disease that shows itself much like MS. But... the brain scans pretty much identified that it was definitely MS. Even with the confidence that it was they will still  have Aaron get tested for the other stuff to double check.

He then started sharing his thoughts about Aaron's condition and where we go from there. The good news from what he shared is that Aaron has the type of MS called RRMS. Which means it can be pretty well controlled through drugs! Which also means that if we get him on the right drug, it will most likely either slow or stop the nerves from being damaged. It doesn't make MS go away, but it controls it and allows a person to live a pretty normal life. This was encouraging to hear. He continued to tell us that we need to get Aaron started soon. I guess MS is more common in women and less aggressive, but when men get it, it is a lot more rare and much more aggressive. With that said, the sooner we can get him medicated the better. He then started talking about the drug options. I liked his approach so much better than what the nuerologist had said. He said there are certain kinds of "old" drugs (like the ones the nuerologist wanted us to take) but the newer drugs were much more effective. He said that one of these was the drug he wanted Aaron to start using. It is pretty aggressive and should really help him. The good news is, if it doesn't do the trick, there is an even stronger medication available. The reason Aaron can't be on that yet, is the insurance companies want evidence that we tried other medications first and they weren't doing the trick. So silly, but unfortunately how it goes. But, we feel good about the medication Aaron will be taking. It is an oral medication which is huge. Most old MS medications are given through a syringe (shot). Unfortunately, wether they are old or new meds, they all have nasty side effects. The med that Aaron will be on, starts out okay for the first week, but on the second week the double the dose and then some not so fun stuff could and most likely will appear. If it gets too bad, they can go back, readjust the dosing and then go back and more slowly introduce him to the larger doses. But, we really need him, if we can to get on those high doses quickly! The other downside to the medication is the time it will take before we actually get it! It will most likely take a month or more. I guess it is very hard to get the insurance companies and drug companies to work together to approve the drug. There is a big process and it will take some time. Once it does get approved they only have special pharmacies that actually make the drug. This type of med. is made in a pharmacy that will actually get it, and then mail it out to our home. So we are in a waiting game again with the drug. Once that it finally does come, Aaron will take it for 3 months and then we will go back and reevaluate if it is working. I just keep thinking, can you imagine if we had to have waited clear until September for our first appointment??? then it wouldn't have been until oct/nov until we even started the drug and who knows it if will even work. We are so glad we got in yesterday for this very reason!

After Dr. Foley left, the PA went ahead and introduced the drug to us, told us all the details, symptoms and what to expect. She then set us up for Aaron's next MRI and blood work. Then we were done. We walked out, overwhelmed but elated that finally we have some direction.

What a blessing and miracle that we were able to get in and even more so, to get going on ordering the drug and moving forward. We are finally to the point where we can actually accept the fact that MS will be part of the rest of our lives. It is still hard, I find myself at times wondering and having some sadness. I have listened to a lot of talks the past few days about faith vs. fear.


Common questions we keep getting and their answers:

1. If we had discovered Aaron had MS earlier, would it have helped?
             Well, just like any disease, it is good to catch and start treating. But, we are not going to go there and wonder what if? We can't, and we can not dwell on it. Again, as I said before, it is what it is and we have to move forward.

2. What are Aaron's limitations going to be?
            We don't know that exactly. MS affects everyone very differently. We are going to to ease him back into the his life and goals. Then we will see where it takes us. Who knows maybe it will push Aaron to new limits? Check out this link if you get a second and you will see what I mean:

http://www.ksl.com/?sid=25951231&nid=1010&title=despite-multiple-sclerosis-man-trains-for-kona-ironman&fm=home_page&s_cid=queue-8

3. Do MS people die earlier than expected?
             Yes, I know people have been wondering this question and I did to in the beginning. Just like us all, we don't know when our time will be to go. But, with most people with MS they say their life span should generally be the same. It is crucial though that they take good care of themselves and monitor the disease closely.

4. Is Aaron having symptoms now?
             After receiving the steroid infusions for 3 days, Aaron's symptoms are about 90% gone. He still finds times he is having to focus on what he is saying and he has experienced some exhaustion. Other than that things are pretty normal. I am sure the shock of this all has caused some other things to be a little off, but hopefully between now and the time he starts his drug he will not have anymore flares. It so, he will go back for more steroid infusions.

5. What other things other than medication are you doing?
               We've heard it all by now. We've read it all and keep getting told by many what we should do. In the long run, we are going to follow the advice of Dr. Foley. Aaron is going to keep doing a mild exercise program and change his diet, which means mine too. We are going to start slowly introducing ourselves to a more Mediterranean diet. We feel like this will be a good starting place for our family and then we will see where we go from there.

http://www.mayoclinic.com/health/mediterranean-diet/CL00011


Well if you really read this whole thing, I am impressed. This was quite the novel. It feels good though to get my thoughts out and to not have to retell the details over and over. Not that we mind talking to people about this, it is just easier to talk to people about it after they know more themselves.

We found out today that Saturday Aaron will have his second MRI and blood work. We are really hoping and praying they don't find any scarring or lesions on his spinal cord. We will keep you posted once we know more.

loves! from the Meacham's