The Painful Road of Neurological Disorders
I have several neurological conditions that have been cause for a long, hard, and painful battle on the road to searching for diagnoses. I was often told by doctors that all my symptoms were in my head, that I was exaggerating how bad they were, that I didn’t need medical help but instead needed mental health help, and all while getting worse. I am very fortunate that while I have had some seasons of these conditions flaring up and being completely debilitating, I have also had seasons of remission, been incredibly supported by my amazing husband, and most importantly experienced God working through the power of prayer and supplying His grace to help get me to a place where I thoroughly rely on Him day by day.
The Beginning of my Battle:
In 2013 I was diagnosed with a neurological condition of the central nervous system that causes chronic pain. It can cause immense pain flares with little to no injury and the flare can last for a little bit of time to quite a long time. It was actually a stubbed toe that led to the diagnosis. While I likely had this for many years prior (I have previously seemed very slow to heal and I thought I just had an extremely low pain tolerance), once diagnosed I spent months and months in physical therapy trying to desensitize my nerves from that stubbed toe. I thought I would never recover from it and would never be able to walk normally again, but slowly my nerves began to feel more “normal”. I eventually went into remission and while I still have intermittent pain flares, I overall do pretty well and have been learning to live with this.
My Journey Through the Unknown:
In 2016, everything went drastically awry. One day I began to feel weaker in my right leg and arm and when I tried to walk or lift my arm the whole appendage would tremor. I went to my primary care doctor who in a nut shell told me it was in my head and told me to go get an appointment at mental health.
It grew worse as the days went on and I ended up in the ER where the physician, who told me these were symptoms of anxiety and should go to mental health, but still thankfully sent me home with a referral to neurology.
My first appointment with neurology was futile and belittling. The doctor saw me for about 3 minutes before telling me that my symptoms don’t line up with any neurological conditions and told me I need to go to mental health for stress and anxiety. I tell ya, I about died right then because I didn’t struggle with stress or anxiety, but I sure was about to start having them due to not being treated with dignity and respect as a patient with visible medical problems.
I tried calling my primary care doctor to get a referral for a second opinion within neurology but he refused. I was stuck and getting worse with no visible hope of help in the near future. At this point, I was only able to speak in few word sentences but most of the time I couldn’t even speak at all, I could barely walk and needed assistance to walk, I couldn’t use my right hand and arm because it was too weak and would tremor when I tried to use it.
I very distinctly remember sitting on the couch next to my husband thinking the worst, that I could had something terminal. He cried, I cried, and we sat in silence on the couch as he held my hand. In that moment, I got very real with God in my heart and through tears streaming down my face, I told God that if I was dying that I wanted Him to still use me until He took me home. That I wanted the road to death to be fruitful for Him and knew that He would strengthen me and give me an abundance of grace for the road ahead. I knew that He would carry me and my family through this and take care of them long after I was gone. I purposed in my heart to do everything I could to glorify God through the pain, the battle, and any treatments until I no longer had breath and life to do it.
Another couple days went by and I was trying to get an appointment with mental health since I had no other place to turn. Their department told me while they would make an appointment for me, it sounded like I really need medical help and to contact the doctor again. The very same day my symptoms got worse and I abruptly had stroke symptoms. My face visibly drooped and when I tried to smile or raise my eyebrows, the right side was lifeless. Once I got to the ER, they called a code for a stroke and had me on the stroke bed within minutes. As they were about to administer the clot buster drug, the ER physician yelled to stop. She had seen my right eye brow slightly twitch which wouldn’t be possible if I was indeed having a stroke. Even in this, God continued to prove that He was sovereign and in the midst of it all because had they given me that drug, it could have killed me. The physician ordered a CT scan which resulted as clear and I was then given another referral to neurology for a second opinion.
It was through God’s incredible intervention that my mom happened to be at a work convention in which the Regional Director of Kaiser was attending. She talked with him and he got us in contact with the chief of neurology in my area, who ordered an MRI for 2 days later and opened his schedule to get me an appointment with him the day after the MRI. He said the MRI was clear, I had no tumor, no multiple sclerosis, no stroke/TIAs, and to put it the simple way…the left side of my brain had misfired, which in turn caused my right side to basically shut down which also affected the speech center of my brain. He said it wasn’t a hardware problem (nothing physically wrong with my brain), it was a software problem (my central nervous system was glitchy). After months and months of physical, speech, and occupational therapy to reconnect those neural pathways, I was able to fully regain function. I thought this was a one time thing since I had regained all my function, was working out 6 days a week, and doing great! Even my pain was under control with minimal pain flares.
Not the End of the Battle:
Then, about halfway through 2018, those brain misfiring symptoms started to come back intermittently and I began to have even more odd symptoms. At this point I thought I must actually be going crazy so I started seeing a therapist and also went in to see my neurologist who said he had an idea of what was causing it but needed to do some tests. We were in the process of searching for answers to the rest of the seemingly randomly and intermittent symptoms when he told me he would be leaving Kaiser and I would no longer be able to see him. This was truly a heart breaking moment for me because he had been the only doctor to believe that these were real symptoms and not just in my head. I had yet another heart to heart moment with God (I actually have these on a regular basis, but they’re so necessary and worth the time to do). I told Him I couldn’t handle going through the rejection of another doctor refusing to treat me and basically telling me that I’m crazy. My loving Abba Father reassured me that He was with me and had all of this under control.
With that, I went online to search for a new neurologist. Thankfully, God wasn’t kidding that He had a plan all along because he guided me to my next neurologist who went on to not only know what was causing the majority of the symptoms, but he even told me that it wasn’t in my head and these were real symptoms and that he was going to send me to Stanford for treatment. I felt relieved that I was finally going to get treatment…until instead of a referral to Stanford, he referred me back to mental health (who had actually just discharged me from care stating that I didn’t have anxiety/depression so continued care wouldn’t be helpful.
With doctors in general medicine, neurology, and mental health passing me along in circles, I finally decided to stop seeing them all. I know that God has told me He will heal me on this side of eternity, so for now I just have to wait and solely rely on Him. This wasn’t an easy decision to stop my search for answers within the medical field and for a doctor who would actually treat me, but I am at complete peace having my Jehovah Rapha, my Healer, keeping watch over my medical care without His use of earthly medical intervention.
Living with Neurological Conditions:
Having some of my symptoms diagnosed does provide some mental relief, but honestly it doesn’t even compare to the peace I had and have even with no answers. I am very glad that the Lord graciously provided doctors to give some diagnoses and has led me to find ways to live more frequently free of symptoms, but the peace of mind I have gotten from knowing those is just that, a mere peace of mind. The peace God gave and gives me is so much more than that, it is a complete and perfect peace that not only makes me feel like, “Cool, that’s a relief to know” but makes me feel like, “Aaaawww, it doesn’t matter if I ever get answers because I’m in the hands of my Abba and He loves me”.
My current life with these neurological conditions is often rough. I have good days, great days, bad days, and days I wish God would just take me home. I have pretty well learned the triggers and ways to prevent flares and ways to recover more quickly from them, but the reality is there is no cure for any of diagnoses I’ve been given. The thought of that is sometimes overwhelming and depressing, but thankfully most of the time it drives me to do what I can, while I can. My hearts desire remains the same, to live my life in service to God to bring Him as much glory as possible, however that may look. He has never steered me wrong and I have confidence that when He gives me the green light to do something, His grace and strength will be what allows me to do it!
UPDATE!
God healed the majority of my symptoms through a 30 day water fast! About 6 months later, symptoms began to return, but GOD IS GOOD! Read about the fasting journey in my post Hello, My Name is Healed.