Well, where do I start? This may be a rather lengthy blog, but it is time to update our friends and family on some of the things going on in our life. Sam and I have only told a select few family members about what has been going on, but as always, the more people praying, the better right?
First of all, I don't know how well everyone knows Sam, but he is the guy that NEVER admits when he isn't feeling well. He hates going to the doctor! So back at the end of September/early October he started coming home from work and telling me he felt like his legs had been going numb from time to time. Well, I immediately thought it might be something cardiovascular, but his blood pressure has always been fine. Also, things were so hectic with us just moving in August, finding out I was pregnant, and Sam being so busy at his new job.. that we just didn't have a lot of time to really think about it. Plus, the numbness wasn't happening that often.
Well, as time progressed, he started to talk to me more about his legs. At the beginning of January, he decided to join his work basketball league. That first Wednesday he played, he looked like a totally different player than I had seen when we were working out together for the wedding last summer. Two minutes into the game he would start to not be able to feel his legs at all, and would even fall down at various times while playing. He spent a lot of the game sitting out that night, and was really stressed on our way home. I was like we've got to go to the doctor, and Sam was thinking maybe this was all happening b/c he was out of shape. He played basketball two more weeks, and was falling down so hard he was bruising up his legs, and I was scared he would break a bone. While Sam and I noticed the coordination and lack of balance issue, we didn't think other people did. Well, the next day at work one of the engineer's asked him why he kept falling down at basketball last night...and that's when we knew this couldn't be just an "out of shape" issue.
So, I scheduled Sam's appointment with our General Practitioner and she made him an appt. for an MRI. Well, we get the MRI back, and her office calls and tells him he has degenerative disc disease. Sam calls to tell me (I was gone for a week in Florida visiting my dad, and Sam's dad Roy was visiting Sam in Louisville while I was gone), and we both thought there was no way he had that. Even with us playing Dr. Google on a simple internet search, it showed us the symptoms of degenerative disc disease did not fit what Sam was experiencing. He had no pain in his lower back!
I get back the next day from Florida, and call the doctor's office and tell them we want to take our MRI to a specialist. Well, the General Practitioner didn't want us to see a specialist, she wanted Sam to come in and talk to her about degenerative disc disease. I had to call three days in a row to finally get them to refer us, b/c we wanted a second opinion.
So now we have an appointment at a neurologist's office. We go and see him last Wednesday, and he evaluates Sam, looks at the MRI, and says his lower back looks like any normal 30 year olds. Degenerative disc disease is NOT the problem. The specialist seemed pretty confident that the problem might be in Sam's upper back (like a pinched nerve or something), and said he will have his office schedule us an MRI on Sam's upper back. If nothing shows up on the upper back MRI, then we would have to get an MRI of Sam's head and look at "more serious issues."
Well, his office had told us they would call us on Thursday or Friday to let us know when the MRI is scheduled for - but they never called. On Saturday Sam felt terrible and was experiencing some numbness in his face (which can also be the sign of a stroke). So I have Sam smile for me, and I could see nothing from the outside, but the inside of his face felt like his legs did 6 months ago. With everything piling up, I was just getting so concerned about him.
So this Monday morning I call the neurologist's office and tell them about my concerns. That my husband is having problems walking, his face went numb this weekend, and that we don't have time to keep waiting two weeks inbetween appointments and MRI's and that we need to figure this out SOON. Yes, I even played the "we're having a baby card" to see if it would help get them to speed things along, because it was just so frustrating b/c I felt like no one was taking us seriously! And I asked the secretary that with Sam's new symptoms was it possible for us to go ahead and do the head MRI at the same time as they do the upperback. Well, the girl on the phone said the neurologist was in surgery that day, so she wasn't sure if she would be able to get a hold of him, and that the earliest they could probably get us in for an MRI was one week. Well, she called me back at 11:00 a.m. that morning and said the doctor DID think Sam should have his head scanned as well as part of his spine, and that his MRI was scheduled for the next day (Tuesday)at 5:30 p.m. (Because of this change to an MRI of the head, they couldn't scan Sam's whole upper back anymore, b/c that would just be too much radiation for Sam to have at one time) I was so thankful, and I feel like this is one of the ways God got doors opened up for us and things moving! Because seriously, had we waited, it would have been another two weeks before we had the MRI, and then they would have seen nothing wrong with his upper back, and then we would have had to wait another two weeks for them to do his head... The whole process was just so frustrating!
Tuesday night we go to Sam's MRI, and it lasted around an hour and a half. He had to be injected with contrast, and received electric shocks during the first one. The whole thing was obviously not a fun experience for him. After his MRI he and I went out to eat, and the poor guy, I start crying at the restaurant...the whole thing was just very nervewracking, b/c honestly I was terrified they were going to tell us he had a brain tumor.
Well, yesterday morning my cell phone rings at 9:00 a.m. It's the neurologist's office. They ask me for a phone number they can reach Sam on immediately, and tell me that the neurologist wants to speak with Sam personally. I know that this is not a good sign, b/c every other time it's just been the nurse leaving a message with me. So I give them Sam's office number and call Sam to tell them they are calling him. I'm five seconds into my phone call with Sam and the neurologist is beeping in on his other line.
The neurologist tells Sam that the radiologist (the specialist that reads MRI's) called him at home at 9:00 last night (Sam and I had left the hospital at 8:00) to tell him about Sam's MRI results. He actually said that the good news is that Sam does not have a brain tumor and will not need surgery at this time, but the bad news was that they think Sam has "rapidly progressive multiple sclerosis." He said that Sam had a lot of spots on his brain and spinal cord. He asks Sam if he is local, and if he can refer him to a different type of neurologist to see that afternoon. Obviously the doctor seemed very serious during this phone call, there was no pleasant tone to his voice. Sam calls me and just tells me the doctor said he had MS, I was sooo relieved. I was so happy he didn't have a brain tumor, and that with MS, while there could be physical difficulties along the road, we could still have a long life together. Well, not so fast... Sam didn't tell me until he got home from work that the doctor said "rapidly progressive."
So we look up "rapidly progressive MS" and basically both of us had the scare of our lives. Apparently it's a very very rare disease that only .01% of people that get Multiple Sclerosis have. "Rapidly progressive MS" is described as malignant (aka cancer), and the person usually passes away within a few months of finding out.
Put yourselves in our shoes yesterday. Here we are, just nine months into our marriage, absolutely crazy about each other, the happiest either of us has ever been, and having the best time being husband and wife, our beautiful little girl is due next month, and we get news like this from Sam's specialist. When you say your wedding vows you think you'll be given 50 plus years to live together, not be given news like this nine months later.
So Sam and I decide to go to the doctor's office early. And my husband is by far the absolute, strongest man I know. I, of course, start crying on the way to the doctor's office. I was trying so hard not to, but it was just the most nervewracking few hours of my life. And our drive was just so normal, and I was just getting so sad, b/c it was like what if we don't get to ride like that in the car with each other for very much longer? I honestly didn't know how we would be able to handle if it was true and he really did have "rapidly progressive MS" and we were told he only had a few months to live. And poor Sam, he's the one going through all of this, but he just kept being his cute self on the drive and trying to make jokes so that I would smile and quit being sad before we get to the doctor's. The whole thing had us in such shock, that we didn't even tell parents before the appointment that the doctor had said "rapidly progressive." We just told them MS and that is it. Neither of us wanted to say it.
Well, we get to the doctor's office 40 minutes early (probably the first time we've been early for anything, ever). We finally get called back, and we're not taken to any type of examining room, he takes us straight to his office. He starts asking Sam questions about how he's feeling, symptoms he's had, going over his medical history, etc. I could tell Sam was really nervous and was just ready for the doctor to give us the news. But this guy keeps taking his time with us and getting all the details.
Then he takes us to an examination room, and checks some different things, and then finally tells Sam to get his clothes back on, and while he does that he's going to look at the MRI. So, Sam and I are like we finally get to know what's going on.
Well, the doctor basically tells us that he thinks the radiologist was being "dramatic" and that he thinks Sam does have Multiple Sclerosis, but he doesn't think it's the "rapidly progressive" multiple sclerosis. And ya know what? I know most people probably wouldn't want to ever be diagnosed with multiple sclerosis, but compared to "rapidly progressing" and a potential brain tumor situtaion... this was like the best news ever. Two people have probably not ever been so happy to be told news like that.
So anyways, the diagnosis isn't official YET. Sam had to give about 8 viles of blood so he could be tested for all of these other diseases we had never heard of...but if that comes back negative (which we will know by Friday afternoon). Then we can start treatment for multiple sclerosis (which involves a daily shot) and move on with/from this.
Some things to pray for:
1) We are getting a second opinion. We just feel like it would be a good idea, since we had a radiologist say it was progressive, and then this doctor said it wasn't. We just want to make 100% sure, and that we are told the same thing by two doctors that specialize in multiple sclerosis. So if everyone could pray it really is just regular MS and not "rapidly progressive" we would appreciate it. We feel really good about this doctor (I think he is pretty much the main doctor regarding MS in Louisville), and I'm sure he's right - but just to put our minds totally at ease we want what he said confirmed by another specialist =).
2) That the blood tests he took don't come back with anything. I don't know what all he was tested for, but we saw the sheet listing the diseases, and 99% of them I had never heard of.
3) And just that Sam remains positive and he responds well to the medication. I know that all of this is harder on him than he lets on (even to me), and I just hope that the first medication we are given, works and we don't have to try a bunch of different ones to have a fit for him!
I feel like with everything that Sam could possibly have, God has definitely blessed us in this situation. As far as normal MS, many many many people go on to live totally normal lives and just take their medication everyday and have no problems! Also, as far as it affecting our child, the doctor said it is not hereditary and that he would never tell a patient to let MS stop them from having more kids. There are a number of famous people that have MS, from professional baseball players, to Olympic gold medalists, to everyone's favorite talk show host (lol) Montel Williams. http://www.mult-sclerosis.org/famous.html So the doctor said as soon as we get Sam started on medicine, if his legs feel fine, he can play sports and do everything he was doing before these problems started.
As for the title, my mom quoted something from Matthew 17:20 to me this morning. And she's right... Jesus said all you have to have is faith the size of a mustard seed to move a mountain. And luckily, since our diagnosis yesterday was normal MS, we don't have to move a mountain, just a very small little hill =).
9 comments:
We will definitely keep your family in our prayers. I know this is all chaotic for you right now, but God will lead you through it. Keep us all posted!
Johnny and I are both praying for you and Sam. Can't imagine yall's rollercoaster of emotions the past few weeks, please know that we are here if you ever need anything-someone to just listen to you cry it out if you want! Amazing the things we take forgranted, thanks for putting me in my place and realizing it's not about me at all. "For only HE knows the plans He has for us". We may not like His plan at all, but it is for a reason. Thinking about you and praying for you both!
You all are in our prayers.. Sam has bailed me out a time or two.. it is my turn to return the favor.. keep the positive attitude!
Ashley and I are keeping you both in our prayers! Sam, It has been quite some time since we last spoke. If there is anyone out there that can handle this... It's you. Keep us posted and stay positive!
Hey guys-sounds like God's given you a workout in faith! It always sucks when your goin' through it, but just like a regular work-out, your always glad you showed up. Tim, myself and the kids will pray like crazy! My aunt was diagnosed with MS several years ago. We kind of freaked out initially, but she's doing so awesome that I forget about it! Praying Sam's outcome will be even better. We love you guys!
Brooke, your mother is so right! It's so crazy, I just read Matthew 17 in my daily devotional last night. It never ceases to amaze me that God provides us with the answers for all things that happen in life. We will definitely keep you all in our prayers. You, Sam and little Reecie Cup mean the world to us. Seriously, if you need anything, please let us know.
Brooke-
We will definitely keep you all in our prayers! I know how trying and scary these times can be. Right before Justin and I got married, he had been experiencing health problems that NO doctor could seem to figure out. It can be so frustrating when all you want is answers, but you have to keep waiting and waiting. Hang in there! We're never given anything that we can't handle.
Justin and I will be praying for you, Sam. What a scary time this must be for you. I pray the Lord will blanket you with His love and peace. He is the Great Physician!
I just stumbled across your blog but I know there was a reason for it. I'm going to share something with you that someone shared with me about my dad and his cancer. It raised my faith to a new level and hopefully it will do the same for you two.
MS is not in control, God is. All three of you will be in my prayers.
Bethany
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