Journey to My Final Diagnosis of Multiple Sclerosis (MS)
For as long as I can remember, I have been living with some type of chronic pain. My memories of when the pain first started are blurred and mix together with other childhood memories. My best guess is that the pain started around the young age of 9. I sat at my desk in anguishing back pain and came home to see rashes on my arms. The doctors dismissed my back pain as “growing pains”, and my rashes as “heat rash”. Looking back, I now can tell that the rashes were due to the inflammation surfacing from what was going on inside my body.
As a teen, it got worse. I would often stay in bed, and stay home from school. At this point, my family, and teachers thought I was playing hooky and I was threatened with truancy. I suffered severe consequences for missing school. At age 17, I developed 2 herniated/slipped discs. Many people dismiss this medical issue as natural degeneration of the spine, but for some people it is the worst pain you will ever feel. This is due to the discs slipping and which nerves are affected. I had chronic pain issues, and the doctors wanted to see if there was any improvement with minimally invasive treatment such as lumbar spinal injections, 1 year of heavy narcotic medication (a 17/18-year-old should not be prescribed for longer than 2 weeks!), and physical therapy. After a year, my treatment plan turned into a mess! Both discs slipped on to my sciatic never (largest nerve in the body running from sacroiliac joint to the big toe). I can honestly say my sciatica pain, was worse than giving birth. It ended up paralyzing me and I couldn’t walk. I was screaming and crying in pain and a friend called my doctor. When the Dr. found out that I couldn’t walk, he sent me an hour and a half away for Emergency Surgery 1 day later. I ended up getting a laminectomy. Immediatley things were so much better. I stopped the medication and felt like I had my life back.
All symptoms were gone!
…for a brief moment in time.
Three months after the surgery, I felt pain in my right hip and numbness across my entire back into my hips to the touch. I was diagnosed with sacroiliitis (arthritis of the SI joint), and osteoarthritis with nerve damage. I thought to myself, “wait, don’t only elder get OA?” and began to fact check. When I asked my doctor, he answered, “absolutely not”. This left my 19 year old brain lost and confused.
Time goes on and I endure the pain day by day. I ignore it most days, except for major flare ups when I cannot walk.
At age 22 I was rushed to the ER because I had textbook symptoms of a stroke. The right side of my mouth drooped, and my entire right side was paralyzed. They held me in the ER for nearly 1 hour and dismissed it as “chronic stress”.
At age 23, I married my Marine and switched from Kaiser to Tricare Prime. I was scared, I didn’t know what to expect, but ultimately I hoped for better treatment. It ended up being awful! At Camp Pendleton Naval Hospital they diagnosed me very vaguely despite evidence of an MRI. I gave them my previous medical records and candidly told the doctors my symptoms. They told me to just exercise and rub a tennis ball on my back. To top that off, they passively told me I was a liar and drug-seeking, which has never been the case (check my CURES Report, Doc). I just want to know why I am having complications with my body at such a young age. The Naval Hospital’s MRI findings revealed, generalized muscle spasms, muscle weakness, cervicalgia, Diffuse spondylosis, facet arthritis, stenosis, and multiple lesions on myS1-S2 (lower back meets the hip). The doctor came in and showed me the most bizarre and hilarious movements he uses with a tennis ball to ease his muscle spasms. He told me this was “the natural aging process”, but that still did not explain any of the symptoms I have experienced since childhood. Despite terrible care, I took all the recommendations they gave me, and they did not help. When I went back and told him that my symptoms are still there and I am in a flare and unable to walk, he diagnosed me with anxiety and hypochondria. It felt like a dream, a nightmare.
SO I made the best decision of my life and switched to Tricare Select.
Having Tricare Select is free. No enrollment fees! The only time you pay (amount adjusted rank) is if the provider requires a co-pay, or Tricare does not cover it all the way. Talking about military insurance can be a blog itself. There is so much to say. But for now I will tell you that using Select gave me the agency to go where I wanted to go, and find quality care while never settling for less. It cost little to nothing for many people, but currently I am in debt for medical expenses. It was still hard to find the right care, but I got to a diagnosis within 1 year of switching.
I first found a primary care manager (PCM) via Scripps. She diagnosed me with Fibromyalgia since I fit the symptom criteria, but we both knew it was something more than that. She could not diagnose anything higher than Fibro, so she gave me all the proper referrals I need to better understand my condition. It was such a mystery to everyone since it was happening at a young age.
It took a car accident to get a proper MRI. I had a concussion. First stop was Neurology. This time they scanned my brain and found 3 lesions. The findings were demyelination of my nerves. They pondered the diagnosis of Multiple Sclerosis AKA MS but they needed more evidence.
I ended up seeing one of the only MS specialists covered by Tricare, who happens to be the best in the Nation. He is a Professor of Neurology and takes a research approach. He ordered 8 MRI’s (which I knocked out in one sitting) to take an in depth look of my brain and spinal cord WITH CONTRAST. After this study we found nerve demylenation everywhere. I have a few dozen lesions throughout my spinal cord and my brain with the largest ranging over my cerebellum.
I feel incredibly blessed to have discovered this Neurologist and finally end the mystery after all these years. After 8 years minimum of fighting, and childhood in pain, I now have a great medical network who has my back (pun intended).
Currently, I am attending more appointments with the MS specialist, and I will begin looking into treatment options. I have relapsing-remitting. I am still working on adopting new lifestyle changes, and some are harder than others. I am off work since I am in the middle of becoming stabilized, and I spend my days writing and being a stay-at-home mother.
Overall, the most meaningful moment throughout the chaos was when I got my final results and my husband calmly whispered in my ear, “you have me, and we will get through this together.”
Family support is everything.