Need to get caught up on all this medical saga? You can read about initial symptoms and appointment locally here, results from further MRI scans here, and spinal tap results here.
I’ve debated about how to go about writing this post but decided that this post will stick with the actual appointment at Shepherd. I’ll do another one later on (in chronological order) that will cover our full trip as we went up together and had almost 2 full days of adventure while up in Atlanta 😉
We had both assumed the first appointment at Shepherd Center would take awhile. I was eager to get the appointment set but was also just in a REALLY good mental place. I was SO HAPPY after our visit for his spinal tap results. I felt so positive. So hopeful. To go from feeling SO low to SO high was a great feeling and I just didn’t want to hear anything that could bring me down from feeling so great. I knew the visit to Shepherd was needed but I also knew it’d make things much more REAL for me.
Shepherd called Zach on Jan 20th and said they had an appointment for him on the 27th! We were both shocked at how quickly they had him scheduled and my feelings instantly shifted. I felt the anxiety and just anxiousness take over (hello back to emotional eating haha!). I was nervous but not nearly as worried as I was between the time of knowing he had spots on his brain to getting those results. It was also a blessing we only had a week to feel those emotions!
Zach was very eager for the appointment. He was ready to get a treatment plan going and to have a set plan of action. Zach is a go-getter and a goal setter and he didn’t like all the sitting around just WAITING. He was ready to GO!
It worked out where Zach had a group to work in the Atlanta area so we went up on Thursday morning. He worked and we spent the night there and then headed to his appointment first thing Friday morning. I have heard NOTHING but wonderful things about Shepherd Center. They are among the top in the country so we’re blessed we live so close…but it’s still a pain to have to visit in the dead center of Atlanta. We have many friends who live north of Atlanta but knew staying with them would mean a lot of traffic mess that morning when trying to get to the appointment! We lucked out where we stayed and got there about 45 min early for our appointment time.
When we pulled in there was a big statue of a man in a wheelchair. The tears had to be held back immediately for me. I know a lot of people live their lives in wheelchairs and have full, wonderful, productive lives. But the mental image of my husband being in a wheelchair gives me more anxiety than anything else in this entire process. When we walked in we passed two patients in wheelchairs and I literally couldn’t stop the tears. I knew I had to pull myself together!
Zach got signed in and I went to the bathroom and met a lady in there who was well into her 70s and was beautiful and seemed to be thriving so I asked her if she had MS. I was hoping she did so she’d make me feel better haha instead she said she was there with her daughter. I let myself cry a little with her in the bathroom. She was very encouraging and kind and said her daughter was doing wonderful which made me feel good. I also didn’t see anyone in the MS waiting room in a wheelchair (Shepherd Center deals with TONS of spinal issues, not just MS) so that also made me feel better.
Almost as soon as I got out of the bathroom we were called back. I was thankful I didn’t have time just sitting with my thoughts and concerns!
Both nurses we met with were wonderful. They did a lot of stuff with Zach. Vitals, some tests, lots of physical exams. They did something called a “walk test” which they will do every appointment. How Zach walks (speed, movement etc) can tell them a lot about his physical condition, even sometimes can show is he’d having an MS related episode just from that test! His dr came in and spent 90 solid minutes with us. When does that ever happen? Very, very impressive!!!
It was a combination of her doing examinations, asking questions to us, explaining things to us, and us asking questions as well. I came prepared with a notebook and questions. I told Mrs Charlotte to write down any questions she had and I’d ask them all for her and Zach and I used her list and added to it on the drive up with questions we had.
I’ll go ahead and kick things off with the the big tough news: Zach is officially diagnosed with multiple sclerosis.
Whew. It hurts my heart to write that out. Kinda why I’ve put off writing this post.
It knocked the wind out of me because we had just been told at his spinal tap results that we didn’t need to even use that term! Zach and I were walking into Shepherd praying for a treatment plan to delay diagnosis.
She actually didn’t volunteer the info that he’s diagnosed and I had to ask and it was the one time that the dr kinda looked at me like I was an idiot. I guess she assumed we’d known he was needing to be diagnosed already. I LOVE our local dr and I’m not hating on him but I do wish he hadn’t given me so much hope when he really didn’t know what he was talking about regarding Zach’s diagnosis!
She did confirm that his spinal tap results weren’t anything significant (he only had one item flagged on his results and it was a level of 1.3 whereas “normal” was 1.2). She actually said he didn’t even need to get the spinal tap done (which was very frustrating for Zach to hear when he had such a struggle with it) and that they will probably want to do a spinal MRI to see if there are spots in his spine or not. She said they don’t even do spinal taps anymore there (good ole Valdosta, always behind in medical advancements). The spinal tap results did NOT show any MS in his spine and 3-5% of patients never have it in their spines at all (we’d love to be in that percentage!).
She went over both MRIs with us again. She explained that the initial MRI (without contrast) showed LOTS of small white spots on his brain. The GOOD news is they are WHITE spots. White spots get smaller over time and can heal to a degree. Black spots are permanent damage that can’t be reversed. He has no black spots at all.
But all those little white spots? The ones our local dr said not to worry about? Yup. They are all MS related. She said his brain overcompensated for the episodes so he didn’t show any symptoms. The MRI with contrast only had one spot light up and that’s because it was a current episode he was experiencing (the vision issues that lead us down this path initially…and the spot was in the vision portion of brain). In September is when he had his first significant symptomatic episode. In time that spot will also get smaller because it’s also white. It lit up on the MRI with contrast because it was still active during that time. She said they will probably do another MRI with contrast soon to compare them and expect that to not even light up anymore at this point and to also have begun to shrink.
She did not give us a timeline as to how long Zach has had MS. The spots aren’t extremely old but he has had this for a long time (We’re guesstimating 5-10 years? But that’s just us guessing – another question to ask at another appointment!). She said it is in the auto immune family and it’s interesting that with the strong genetic line of auto immune diseases in his family (his mom, sister, mrs. charlotte’s aunt, mrs charlotte’s grandmother) that he’s the first male that we know of to experience one. Usually it’s only passed on to females and MS is also much more common in females. I actually have talked with someone recently whose brother has MS and she has rheumatoid/lupus just like Courtney has. She said in her research siblings with auto immune diseases don’t usually get the same ones, and it’s so interesting that they are a sibling pair with similar auto immune diseases to Zach and his sister. While their parents don’t have auto immune related issues, there are people further back in their family line with them. Zach’s dr said there is some genetic links to MS but that it’s kinda like cancer…where you carry the gene but something environmental may trigger it. Like I could carry a gene for lung cancer (which my grandfather died from) but since I don’t smoke it’s unlikely to trigger it. Same type thing. They don’t know an exact cause of MS but believe it’s a combination of genetics and environmental factors.
His dr said that just looking at both of his MRIs were enough evidence to diagnose him.
Of course one of my first thoughts were about my children. The average person has a 1 in 1,000 chance of having MS. Our kids? a 1 in 50 chance. But still that means if we had 50 children then ONE of them would have MS. Not too bad of odds.
The biggest things she said we can do to prevent it for our children are to make sure they take a good multivitamin, plenty of vitamin d as well as plenty of calcium (I want to ask for exact amounts per day at a future visit but this was discussed towards the end of our time and I didn’t want to be annoying haha). I confirmed this with my children’s dr. She said all we can do is load up on vitamin d and calcium and pray they don’t have those genes. It’s scary, but knowing the genetic link does play a pretty large role also makes me feel a lot better. Feeling like it’s not in my hands minimizes my stress and worry about that!
I did ask about the clinically isolated syndrome and she said because he’s only had the one symptom showing episode that it’d be easy to assume that’s what he had but that those older spots are what really give a clear need for diagnosis at this point. There is no need to wait for a second symptomatic episode to occur to diagnose because his family history combined with the older spots are clear evidence that he has MS.
On the GOOD side he doesn’t have those black spots so that’s HUGE. He also has been officially diagnosed with relapse remitting multiple sclerosis. I plan to do a post with more information about what MS is (because really I need to do more research to fully understand as well!) but if you HAVE to have MS then you WANT the relapse remitting type. It’s the least severe of the options and has the most treatment plans available with the best prognosis long term. Most people are diagnosed with this type and we’re so, so thankful to be among them.
Overall his dr said he looked GREAT. He has ZERO signs of MS at ALL. He has no symptoms or side affects of having the disease. I LOVE that she said her goal is to NEVER HAVE ANOTHER EPISODE. Everyone we met there was very positive about the future for Zach. They kept saying they plan to do everything they can to keep him exactly how he is right now. Which is music to my ears.
I asked straight up about the wheel chair situation because it does cause me so much worry. She said to stop even thinking about that. Zach is in a GREAT spot with all of this and she truly believes we can go episode free. I asked about statistics/expectations of disabilities and she again said NONE. She said herself that he’s the BEST CASE scenario possible in all of this!
Since he does have such a great prognosis she was on the same page we are with treatment plans: be aggressive! He’s young, healthy, has no symptoms, why not?
There are three oral options for meds, which is what we had assumed we’d be doing. BUT they aren’t the most aggressive options. She gave us three options she’d recommend. The first was a pill once a day but the negative of it is that he’d be at a higher risk for infection because it lowers the immune system. It’s also newer and has only been on the market for about 5 years.
We told her we trust her. She’s the one who knows what’s best and she said she’d like to see him go with an infusion. It’s Tysabri and he will get infusions IN ATLANTA every 28 DAYS. It’s THE oldest MS medication on the market (which I knew would make Mrs Charlotte happy). The largest risk with it is a brain infection. 50% of the population has the marker that indicates they could develop this brain issue and these particular meds can trigger it. But in all of the history of Shepherd Center they have NEVER had someone get the brain issue. She said if he did test positive for that marker then we’d be conservative with the Tysabri and only do it for 18 months then switch to something else.
The third option is a brand new infusion that is set to hit the market around March. It would be an every 6 month infusion.
We went with the Tysabri. He did all the lab work and we just heard back this past Thursday about those results. Zach DID test positive for the JC Virus (which is the marker they look for in concerning the brain issue…which is called PML)/ Which didn’t surprise us as when we heard 50% of people have it, we figured he’d be in the 50%.
They did also find protein in Zach’s blood. Which they said was a small amount but before starting any major treatment like this he needs to go to a hematologist in town to get it all checked out.
ASSUMING the blood stuff is okay then we will still go forward with the Tysabri. He will go to Atlanta for the monthly infusions and then after 18 months he will come off of that and go to the new, every 6 month, infusion.
I will go ahead and say this. I am upset. I am scared. I am overwhelmed. BUT I believe in God’s perfect timing in ALL things. And the fact that Zach has HAD this for awhile? I believe God is revealing it to us NOW for a REASON. And, to me, it seems like that reason is for the treatment plan. How crazy is it to be diagnosed just a month before a new treatment option hits the market? Zach and I both felt most comfortable with the longer-proven treatment plan in Tysabri and Zach having that marker for the PML is just a God thing to let us know we need to switch to that new drug when that time comes! 18 months on the market will give them time to get kinks out before Zach has to switch over and every 6 months will be a lot better than every 28 days!
The dr also made us feel good when she said that MS slows down as you age. So once Zach hits his 50s this will get to be even less of a change in his daily life. Right now we’re experiencing little to NO changes at all in his day to day life or routine. He did discuss with her that he feels a slight tingle ever so often but nothing major or consistent (and it could even just be his arm sorta falling asleep when laying down or something) and that he does feel tired more often and in a more “exhausted” feeling type way.
We asked a good bit about symptoms and things we need to change in our lives to try to help minimize risks of episodes, etc. She said:
- Stress, sickness, lack of sleep, etc can all bring on symptoms and those symptoms may SEEM like an episode but if they don’t last longer than 24 hours then they aren’t one.
- Those same things could also trigger an episode. But we won’t know that they are triggers for him until he has an episode and we can relate it to those things.
- Some people don’t have an issue with heat, but it can make him more fatigued feeling, bring out old symptoms from past episodes (since Zach has just had the one…he’d probably start having vision issues), and can make you think you’re having an episode.
- If he does have issues in the heat then he can just cool off and those symptoms should go away. Same as if he’s stressed – de-stress and symptoms should dissipate. Same if he’s tired, sleep and he’ll feel better
- The big thing is to pay attention to his body and then take CARE of his body. Recognize if he’s feeling very tired and then NAP. Recognize if he’s feeling overheated and then GET OUT of the heat.
- Don’t overly obsess about it because you will then see symptoms that aren’t really there and worry which causes stress which isn’t good either!
We brought all of our Advocare stuff with us for her to look over and she said all the vitamins he takes are great (Coreplex, Probiotic Restore, Omegas, Calcium) and that both Spark and Meal Replacement Shakes looked great. She said avoiding too much caffeine is important but that Spark has just the right amount for it to not be problematic. She said the big thing with any vitamins is to make sure we avoid anything that has “immune boosters.” With auto immune diseases the immune system fights itself. So you don’t want to make that immune system stronger, since meds actually will be making it weaker to help fight the MS!
When they called me Thursday with his lab results they did also let me know that Zach has a vitamin d deficiency. Which, as I mentioned, is huge. They have linked vitamin d deficiency with auto immune disease! He will be taking a prescription strength amount of Vitamin D once a week to make sure he’s getting all the amounts he needs (it’s crazy he’s deficient since he is outside ALL the time!).
We talked a little about other lifestyle changes. I’m most concerned about his sleep. She said listening to his body is crucial. If he’s tired, he needs more sleep. Exercise is good. Even just walking etc is good. Eating healthy is also important. She said the biggest thing to watch out for is salt/sodium. Avoid anything canned. Avoid preservatives. Eat organic as much as possible. So pretty much what we’d already planned on and started doing 🙂
In moving forward my biggest concern is with our house. Our bedroom is where I have my “office” area as well as where I have the elliptical to work out. I don’t want Zach to be tired but not go to bed for fear of disturbing me. And, on the other side of that coin, if he is needing to go to bed I don’t want to be stuck twiddling my thumbs unable to work out or blog 😉 I feel this is another area where God knew this day was coming and already helped us plan for it. When we built our house the builder accidentally put flooring in an attic storage area. We had paid to have the flooring above the garage (which is now the playroom) but not in that attic space. That space is now able to be a bedroom!
We have talked about “someday” remodeling our room and making it larger and encompassing what is now currently Tess’s room. We’d finish that upstairs area and make that her bedroom. Now with all of this medical news I feel like it’s another area of God’s perfect timing. Tess will be three this summer and I feel totally comfortable having a two year plan to finish that space upstairs and move her up there at age 5 (which is the age both Britt and Kye moved upstairs). Rather than remodeling our room to encompass both rooms, we can instead just make her bedroom my “mom cave.” We can move the office stuff and elliptical in there so I have a place to go and so our room is freed up for Zach to be able to go to bed as early as he needs to. And that way too if there are days where he needs rest during the day I won’t have to disturb him.
Obviously the past several months have been a true rollercoaster of emotions for us. When we left Shepherd Zach felt GREAT. He was happy and feels excited to have a game plan. He loved that he shows no signs of MS and feels so positive moving forward and liked everyone we met at the center.
I was pretty upset. Thankful for our answered prayers (as our specific prayers were that they’d want an aggressive treatment plan) but I struggle with this official diagnosis situation. It’s hard to think that my husband has ms. My kids’ daddy has ms. That people will probably say “Oh that guy Zach Parker? The one with MS?” I just don’t like the label. And I know that’s silly. And that it’s a blessing to have the label if it means treatment. But the label still stings.
As far as where I’m at emotionally with everything, I’m obviously not as great as I was post-spinal tap results but I’m also not as low as I was post-MRI with contrast results either. I’m SO thankful I got SO many emotions out of my system back when we got the MRI with contrast results. I worked through a lot of my worries and fears and just got out those negative “I can’t handle this” type feelings. Which is SO important yall. I can’t stress that enough. If you’re going through something tough…allow yourself TIME and GRACE to really FEEL it. I’m so thankful I did that when I did as it has made this news a lot, lot easier to handle.
Our game plan moving forward is get this protein in his blood figured out, start the Vitamin D, and get going on that first infusion. The infusions will last an hour long and then he stays an extra hour for monitoring. I hate the whole driving to Atlanta thing but I’m SO thankful they will be monitoring him so closely through the whole process (and such a God thing again to live this close to THE best place in the country for MS patients to be!). There are other possible side effects which we will pray about too but I do feel confident in this plan of treatment for him. I will go with him for the first infusion just in case he were to have a reaction. Ideally I’d honestly like to go with him every time. I want him to know I’m 100% In this with him! I also want to be PART of his MS life. I want to know the nurses, staff, and other patients. BUT I also respect Zach’s wishes and he doesn’t want to feel like he’s inconveniencing me or family in asking them to keep the kids so I can come. So we will feel it out and see how it all goes. I am hopeful once we switch to the every 6 month one that I can go both times. I think twice a year he can let me come right? 😉
Part of the tough news of getting diagnosed is that it means we have to get a letter from Shepherd to add to our home study. Our case worker has worked with an adoptive mother before who has MS and it wasn’t an issue so I feel confident it won’t be for us either. And I truly believe that all of our decision to adopt is straight from the Lord. Again, I trust HIS timing in it. The baby we’re meant to have join our family is the one we’re meant to have. If MS means it takes longer for that match to happen then that’s how it was meant to be in order for that baby to end up in our arms!
I thank you all for your continued prayers for our family. I hope this wasn’t all too much as I know it’s A LOT. The big three things to know are:
- Zach has been diagnosed with relapse-remitting MS
- He will go to Atlanta every 28 days for infusions for treatment
- The goal is to NEVER have another episode!
Please do keep us in your prayers! That Zach will still be eligible for the infusions (that the protein in his blood is not a deal breaker). That he will respond well to treatments. That he remains symptom and episode free!
Two days after our visit to Shepherd Center we had a Ladies Tea at church. It was the same tea last year where I felt God’s presence in our adoption decision. Well He was at it again this year 🙂 A lady who attended the tea has a daughter with MS. She has had it for 15 years. She was diagnosed at age 32 (Zach’s same age) and her only symptom was the vision (same for Zach). For 10 years she did at home injections (of the drug from the study I was so hopeful about actually) and then 5 years ago she started the infusions of the Tysabri! She has had GREAT results in the 15 years since being diagnosed. Her only symptoms are that extreme fatigue on occasion and also random tingling feelings in her limbs. But otherwise she is symptom free AND she’s NEVER had second episode yet!
That gave me such hope and was such a reminder from the Lord that He’s got us. We’re His children and He loves us and He has a plan for us! I am thankful that Zach is my husband. That he is so positive and optimistic about all of this. I’m so thankful that we’re in this together. I’d rather face MS and face it together than not have our marriage bond. We’re a team and we’ll face all of this as a team. I can’t wait to see the ways in which God will allow Zach to use this disease to glorify HIM!
IF you happen to live near Shepherd Center (it’s near Atlantic Station) and have a couch or spare room and wouldn’t mind Zach crashing please do let us know! We’re a tad nervous about the missing work/travel expenses associated with treatment!
Also if you know of anyone who has MS and have any insight to share please contact me as well! MS has come a LONG way in a pretty short time period so we’d love to connect with others around our age or who have been in the “game” for a few years. It’d be a blessing to learn from them and their experiences 🙂