Saturday, July 21, 2012

Mayo-long awaited diagnosis

I have so much to blog about and we have had some fun experiences lately but I had to write a few feelings and updates on my life and health. This has been quite the journey and I am so grateful for all those who have lightened my load with emails, comments and calls. It has made such a difference and I am so grateful. Thank you.

Yesterday was a remarkable day. Thomas took off work, we arose early, Thomas gave me a priesthood blessing and then we headed out for a much anticipated doctor's appointment with Dr. Brent Goodman, Mayo Clinics' Autonomic Dysfunction Neurologist. I was hopeful. I was nervous. I was scared and at peace simultaneously. Thomas held my hand as we drove. I filled out the last minute updates to the paperwork adding the new symptoms that have begun to flair up in the past couple of weeks.

I looked at Thomas and he knowingly squeezed my hand a little tighter as they called for Jerlyn Murphy. We walked in to one of Mayo's diagnostic/discussion rooms with plush chairs and sat awaiting the new doctor's input on what is happening to my body and causing it to deteriorate at such an alarming rate. Pouring my heart out in prayer, I begged my Father in Heaven to please let this doctor have an answer, and if not to please at least not treat me like I was crazy.

Dr. Overall walked in and said he would evaluate/do the testing/discuss all my symptoms and then Dr. Goodman would be in. An hour later, after being poked, questioned and evaluated, the doctor left. Thomas laughed that when I was asked if I was feeling hot or cold and I had no sensation either way, the doctor burned himself making sure his heat sensor was working. I laughed... it didn't hurt, I didn't even realize that I was being poked with needles. No sensation. No feeling. Hmmmm. That was knew. I laughed and told him to remind me to add that to my ever growing list of symptoms. Lovingly, Thomas continued to try and joke about the doctor's reactions while I had to close my eyes and try and stand without falling over and he said it was all he could do not to laugh as I was struggling to walk on my toes or heels (not possible) that my concentration looked like Hayden.

As Thomas made me smile and relax, a tall man walked in the door followed by Dr. Overall. He introduced himself as Dr. Goodman as he quickly took a seat and immediately began stating back the events/passing out/symptoms that we had just discussed. He repeated some of the testing that I had obviously failed and had me sit back down.

As he began to speak, I offered another quick and silent prayer.... as I heard the words, "I am almost positive that I have figured out what is happening to you and what is causing all of your symptoms." My heart leaped. I had waited an entire year to hear those words out of a doctor's mouth. He began to proceed speaking a lot of doctor's language and quickly stating part of what was wrong with additional testing that needed to be completed.

Thomas asked what type of time frame we were looking at and the doctor replied with is there any way to cancel your schedule the rest of the day. This is something that needs to be handled immediately. He continued with, I would love to complete it today but I will have to schedule six different tests and will need this completed as soon as possible, we do not have time to wait on this. We need baselines so that we know how aggressively we need to treat and what type of treatments to start with. Thomas continued with asking what type of treatment. The doctor looked into my eyes and then Thomas and back at me. Staying as calm and cool as when he walked in the door he said that he would wait to talk treatment plans with us until we are actually going to begin and that there was no reason for me to stress out about the treatments while the testing/biopsies and scheduling will take close to two to three weeks to happen. He asked us to go sit in the waiting room while Mayo schedulers would try to attempt moving things around to accommodate my immediate testing needs.

Thomas and I sat in the back of the waiting room and looked at one another. He gently took me in his arms and told me that although the next couple of weeks and months were bound to be rough, that this was much better than the unknown and doctor's looking at me like I was crazy. Every symptom, weakness, pain, fear, exhaustion, passing out and seizures were really happening to me and a doctor validated that each and every symptom was part of this infirmity.

Autonomic Neuropathy combined with an underlying Autoimmune Disorder was at the heart of my problems. Postural Orthostatic Tachycardia Syndrome (POTS) was also identified with Neurocardiogenic Syncope. There were other conditions that need to be ruled out in addition to this, but we had the culprit identified.

On Monday, I go back to Mayo Clinic sans Thomas for blood work, EMG testing, several biopsies, autonomic dysfunction testing and a couple of other tests that have escaped my mind at the moment. Which autoimmune disorder must be determined and then baselines set to determine the aggressiveness of treatment and to have a comparison to see if treatments are working.

As Thomas and I sat in the car, we felt relieved that this illness and journey had a name. We felt hope. We felt such gratitude to our Father in Heaven for leading us to doctors that would be able to diagnose and treat this disease. We expressed gratitude for our Father in Heaven for sustaining my life while on this journey. He has definitely carried me through this journey. He has not left my side. He also provided incredible people to walk this journey with me. I could not have done this without all the incredible loved ones that have walked every step with me. They are angels on this earth. My biggest angels are my son and my husband. I am eternally grateful that I have them to hold me up during this trial. Thomas for his love and support and Hayden for his humor, tickles and love.

I know the road ahead will be hard. I am sure the treatments and recovering will be long, tiring and difficult. I realize that I am fighting for my life. I also know that I am not alone. I know that so many angels here on earth will walk it with me. I know my Savior will be with me, as well. He always is. I feel incredible amounts of peace that this is the journey that I am to walk. I firmly believe that if the Lord takes you to it, he will walk you through it. I'm holding firmly on to my Savior, my husband, my son, my family and friends and together we will fight this battle. I am ready.


Monroe Family said...

With tears in my eyes, I am so happy for you!! I don't personally know Dr. Goodman, but he sounds great! If I ever meet him, believe you me I will thank him profusely for helping you find your answer and helping you get better! I'm SURE it will be a long road. Autoimmune disorders often are hard to treat, but definitely possible!! I love you so much and will keep praying everything works out! Call if you need ANYTHING! LOVE YOU!

Jodi Davis said...

I am with Lindsay, tears are falling from my face but I am so thankful that you are finally getting the necessary answers. It is still a long road ahead, but you will never be alone. I love you!