Daily Life.....

Well, I thought it was time for an update for anyone who was wondering what has been going on with Mike and his MS. I didn't realize I hadn't posted anything on here for 6 months, I guess I'm not very good at this blogging stuff!
About 6 weeks ago Mike had another round of IV steroids at the hospital for a flare-up. This time the flare-up was mostly in his arms and hands. After the week of steroids at the hospital, he continued to have the same symptoms. I decided it was time for Mike to head back to his neurologist, Dr. Landon. We haven't seen him since Mike was first diagnosed, and we both thought he was having too many symptoms and we wanted more answers about all this. We are learning just how frustrating and confusing MS really is. The number one thing is don't ever think people with MS that 'look well' are feeling well. Mike has constant fatigue that he fights through every day of his life. It takes him 3 days to fully mow our lawn, because he needs to take many breaks. He feels weak in all his extremities. His right leg has not gone back to the same since the first major 'attack' last July. Dr. Landon decided to get a repeat MRI of Mike's brain, neck, and back. A few weeks later Mike had an appointment. The news was actually AWESOME!!! The brain lesions had stayed the same, 4 lesions on his cervical (neck area) spine had almost disappeared! None of the lesions were 'enhanced' which is good. I feel like I want to go back to college to just take neurology courses! We are constantly looking up things online and in our books from Dr. Landon, and are still confused. But either way, Dr. Landon said it looks like Mike's daily injections of Copaxone are working! So.....this is why MS is so frustrating....Mike asked why he was feeling so many symptoms. "Because you have MS Mike!" said Dr. Landon. So Mike was then started on 2 new medications. He has started one, for burning/electrical feelings in his legs, feet, arms, hands. He was prescribed a muscle relaxer for leg spasms at night, which he has not tried. Dr. Landon also wants him to try a new medication, which is only for MS patients, and it is supposed to make his legs feel stronger. At first we were nervous to try this, because we thought it was new. But come to find out, it has been used for 15 years now through compound pharmacies (called 4AP). Dr. Landon has over 100 people on this. So if our insurance doesn't cover the new med, Amypra, then we will most likely get the 4AP made at Watkins. Mike has also been off work due to all his symptoms. This has been a rough transition, but trust in God to lead us.
Am I confusing you yet?? Trust me, this has consumed our lives since August. Not ONE day goes by that we don't talk about MS. Many tears have been shed. But many jokes have also been made about it! You have to laugh, or else...we will go crazy. We would like to thank everyone for continued prayers and calls and emails. It means alot to us.
Please pray for:
~new medication to work! Mike is going to try it for a few weeks and see if he feels up to trying to go back to work. Dr. Landon says it either works, or it doesn't.
~the kids to understand that Dad gets easily tired and can't do everything is one day!
~Mike's mood is sooooo up and down. He gets easily frustrated and sad over all this. Sometimes he keeps things in too long, and then has 'breakdowns'
~medications to not be expensive, and for Mike to be able to tolerate them. He has gone from never being on a prescription to now having 4 total. That doesn't sit well with him.
~for Dr. Landon
~MS research


Walk for MS - September 11, 2010

We are planning on doing a Walk for MS Saturday, September 11 in Grand Haven. If anyone is interesting in walking it with us in honor of Mike, or donate to the cause (it's run through the National MS Society) let us know! The summer always goes by fast, Sept. 11 will be here soon!