Journey To My Diagnosis

 Written: January 25, 2018

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Have you ever had moments of waking up and wishing that things were all just a dream? Do you ever question yourself and wonder why you are chosen to deal with a specific issue for the rest of your life? You would think that it would be a relief being told what is wrong with you, RIGHT? It is so funny how we as individuals imagine how we want our our life to be. I always imagined myself being one of the healthiest individuals that conquered so many things in her life with no health complications. I am not saying that I haven’t already done most of that but when you have something that alters your plans you don’t see half of what you had planned to do in life.

I can honestly say that December 22, 2017 was the day where I fell apart and lost every little faith, my positive thoughts were shattered and fear stood in front of me with a stare that I would never want anyone to endure. After a long day of driving back from Bend, OR and sitting under the MRI machine for a good hour and half my life was turned upside down with just one little phone call. My neurologist personally took the time to go into the office on a day he wasn’t  scheduled to be there and then call me on his cell phone to tell me in the calmest and most reassuring way what is going on. After a long 4 years of tests, 5+ doctors, surgeries and trying medications my questions of what is wrong with me were finally answered. In the words of the calmest doctor: I have Relapsing- Remitting Multiple Sclerosis (A.K.A. RRMS) and it is TREATABLE. The studies have come a long way and there are so many different things we can do. It is NOT A LIFE SENTENCE it’s just something that I will have to LIVE WITH.

For those who do not know what that is here is a link from the National MS Society that will describe what it exactly it is. https://www.nationalmssociety.org/What-is-MS/Definition-of-MS.

FUN FACTS: MS is determined within the first 15 years of life. Those who live near the 42 parallel are more likely diagnosed with MS. Those who lack vitamin D which is often provided through the sun are more likely to be diagnosed with MS.

I have 3 active lesions in the brain and 2 active lesions in the spine. As for any past activity we don’t know exactly how many others I have had over the years but we are treating the ones that are currently showing up on the MRI and hoping to control any further activity. You are all probably asking how? The truth is no one knows how they get MS. There is no definite trigger or known source. There are so many different things that can factor as to how someone has MS. We know for sure that no one in the family has had it. So hereditary is not a factor.

I am sure that the first thing that many of you are thinking is WOW! or I am sorry. I honestly say that at first, hate ran through my veins as I look back at the first day I expressed my pains and a doctor just told me I was too young and healthy to have any issues. I wish I could go back and have found it back then. Oh! the doctor bills we would have saved on. As for the compartment syndrome and surgery, I don’t really know now if I had it or not. But that is all in the past and there is no point to dwell on those moments. I have had my moments of breakdowns, I had some troubles informing family but it was important for them to know what is going on. I am struggling as an individual and trying to figure out what is going on so I can get things under control and live life. I have good days and I have bad days but that doesn't slow me down. I will not give up and my family is the most supportive group I could ever have. I am here now, ready to share my story with all of you.

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We made it through Christmas knowing the news that I received and shortly after Christmas we started our journey to better myself and begin managing life a little more. December 27th, December 28th, and December 29th, 2017 were 3 long days for me. During those 3 days I found myself at the Sky Lakes Hospital Infusion room in Klamath Falls surrounded by chairs and other individuals who are struggling to maintain their lives. My father in law Mike and I sat in a chair for an hour while a nurse poked me to connect an IV where they gave me 1000 mg of steroids. It wasn’t just 1000 mg total for all 3 days. In total I had 3000 mg of steroids pumped into my system. The steroids were given to help me get the active lesions under control and speed up the healing process. I fought mostly nausea and upset stomach the entire time that I had the infusions. I have learned that steroids make me sleepy and tired which is good because majority of the time I have issues sleeping. On a positive note the steroids eased the pain and numbness I was experiencing. I can’t express how nice it is to walk without pain. It is like being on cloud 9. I can feel my feet on the cold floor and the sensation of every bone being moved with feeling is a miracle. So I have had positive response to what they are giving me as of right now.

( Pictures: Left to Right: Day 1, Day 2, Day 3)

 

(Picture: My Father In-Law Mike Larsen)

I read a 3 page printout of the what the steroids were and their side effects. After I read the papers, I was talking to one the nurses and she said that one of the common side effects from steroids is excessive hair growth. So my father in-law Mike and I wanted to play a joke on Beau (my husband). On the first day of steroids we went to the dollar store and bought the kids fake stick on mustaches. That night I tied my hair up and put on a fake mustache. Beau came home from work and I looked at him saying sorry love but the side effects took over and this is what happened. Jokes like this and being positive have been helpful for all of us as we have been adapting to the changes that are being made. What do you all think? Who has the best mustache?

(Picture: Beau and I)

January 2, 2018 we made a trek back to Bend, OR once again to see my neurologist who spent 2 hours with us to talk about what MS is, what can be done, the studies and what we as a survivor and fighter can do to prolong my life. We decided at the moment that a spinal tap was our next step. You may ask why a spinal tap if a MRI shows my active lesions? I am an individual who does not like to take medication if I do not need to. I want to ensure that I have MS and that the medication we are looking at will treat what I have. Along with the spinal tap we will be doing blood work to test my vitamin D levels, a brain virus and any MS look alike diseases. The blood work will also test to see if I carry a latent brain virus that about half of the population has. If I do not have the virus I will start on a pill that I will have to take 2 times a day for the rest of my life. If I do have the virus then I will not go on the medication because it could activate it and cause the brain to swell and many other complications. We will then look for another way for treating my MS. I have been cleared to return to dance as long as I do not have any major flare ups. Doctor said he does not see why I should halt my daily activity if I am feeling well. I am looking forward to returning to dance but for right now I am going to stick to weight lifting which Beau and I started doing as a couple in October 2017. We made a small workout area in our garage and we workout together supporting each other. I find that I feel better after weight lifting and have more energy. We are looking at continuing that along with incorporating yoga or some calming activity for days that we rest. It is all a learning process to find a routine that best fits what I can do without over doing it.

I can’t express that gratitude I have for the neurologist I see in Bend, OR. He was so thorough with my first appointment and with his knowledge he took the step to test me for MS even though I do not show majority of the symptoms individuals with MS do. The only things he said he wanted to check it for was because of my overactive reflexes, my age and the leg pains I was experiencing. He said he wasn't sure that I was a MS individual but he would rather rule it out. Thankfully with the MRI it showed the doctor what he needed to see and he followed through to get me on steroids as soon as possible along with moving my appointment so I saw him right away. I never felt so cared for before. He was so positive and reassuring that we can get this all under control. He even gave me the option to see a peer he works with who specializes in MS. He said he understood if I would prefer working with them since they are more educated about the studies. The only thing that he requested is that I do not ignore him in the hall if I see him. For a doctor to be so caring and willing to get more help I can say that he has my thanks and deepest appreciation. 

I also want to show my thanks and appreciation to all of the other doctors that I have had an opportunity to see throughout the past 4 years. Without their help of trying to figure things out by ordering tests and sending me to another doctor for an opinion I would not have made my trek to Bend, OR and begun this journey to a healthier me. I would be stuck in a corner wondering why me? They all tried and when they didn't know the answer they asked another. I am thankful for their time and for listening to my crazy health history.

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January 12, 2018 I found myself back in Bend, OR with my husband Beau once again. This time it was for my spinal tap (aka spinal puncture). I checked into St. Charles Hospital at 11am and at 11:45am I was back with a nurse answering questions and being informed of the procedure. I was then introduced to the doctor who was to perform the spinal tap. He again told me what was going to happen and how he was positive all would go well because I was a healthy and young individual. After that a x-ray tech took me to an x-ray room asked me to ly on my stomach on a table in front of the x-ray machine. To spare you all of the details all went well. Doctor was impressed with how healthy my spinal cord looked and how strong of a back I had. He was able to get the amount of spinal fluid needed for the testing and finished up with a smile on his face telling me all is good and thanks for my patience. I was bandaged up and a nurse came in to take a blood sample and then off I went to the hotel to lye on my back for the next 4 to 6 hours as directed by the doctor. Only bathroom breaks, and drinking lots of fluids that had caffeine were allowed. Thankfully I did not have any headaches or other issues other than soreness.

(Pictures: Left: Before Spinal Tap and Right: After Spinal Tap)

 

January 23, 2018 at 2:30pm I finally received a phone call from the doctor's office. The results from my spinal tap were finally available. The first test showed that my vitamin D levels are low so I have started taking a supplement and in a few months I will be tested to see where my levels are.  I am so blessed and thankful for hearing this news of the second test. My spinal fluid had a cytology test done on it and I am CLEARED from anything malignant which takes me off the table for any types of cancer. My blood test for the latent brain virus came back negative which means I am cleared for the oral pills. And the final test confirmed that I have Multiple Sclerosis. Now we are at the waiting game for medication and in two weeks I will be visiting a MS specialist which we hope will be able to answer any and all questions we may have. Good News is... We have an ANSWER!!! FINALLY!!!

I have participated in the MS walk for the past 2 years in support of a young ladies scholarship program platform and in honor of a friends mother whom they lost to MS. I never thought that I would walk for myself but this year that has changed. I will be participating in the Rogue Valley MS walk April 28th, 2018 since it is the closest one to us. I will be creating a team and would love to have you join in on the walk. If you are unable to participate please consider donating. Any amount even if it is a dollar will go a long way to help find a cure. Please STAY TUNED for more information on how to donate and join the team.

( Pictures: Left: MS Walk 2016 and Right: MS Walk 2017)

 

This is the START OF A NEW JOURNEY and we will be working towards a BETTER YEAR OF HEALTH. I am blessed to have a very supportive family and a loving husband who is sticking by my side. I am so blessed to have had family who kept faith and convincing me to continue searching for answers. I know that I will have to learn to listen to my body and not push myself too much. I will improve my eating habits by incorporating more vegetables and fruits. In the words of my doctor I need to stress less. So do that mean eat more desserts??? (Stressed spelled backwards). There are so many athletes and individuals out there that are not letting MS control their lives. I will be one of those people. MS doesn’t define who I am, how I act, or how the world sees me. My life may have changed since being diagnosed, but my very own story is unique and tells the world how strong I am. I am not a quitter and will not give up. I am too stubborn for that. I have learned during this testing journey that my patience is very thin when it comes to waiting for my results and talking to doctors about my paperwork is a little frustrating. If anything I am learning to let it all go and enjoy what is in front of me.

Pascal from "Tangled" has the right attitude.

Picture Source: https://www.pinterest.com/pin/539939442819147827/

Cheers to a New Year! We have results and now we are working towards gaining control of what is going on. It will take one day and one step at a time but I know I GOT THIS.

I know that ALL of this information can be a lot to digest. Trust me, its a crash course in itself. PLEASE do not go researching everything and worrying. That will only make things even more frightening. We are working together with a great team of neurologists/specialists and we have a plan. We are going to get things started to help slow the progress of things. I am strong and will do everything I need to do.

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Before I leave you with one more quote, I just want to share this little Bumble Bee that my mom has gifted me during this time. First of all it is an interesting that bumble bees cannot fly. I did not know that. Did you? Remember that no matter what you have encountered in your lifetime you do not have to give up faith or hope. You can make a difference but only you can make the choice to better yourself. You are worth it and it may be a rough road but you can do it. You have support and never be afraid to ask for help.

Until NEXT time,