My fight against Multiple Sclerosis

My name is Shannon and I've been an RN for 16 years. I have an Associates and Bachelor's degree. I saw myself making a long career of this but I began having problems with my health many years ago. I was diagnosed with dysautonomia in 2017. It's an autonomic nervous system dysfunction. I was also diagnosed with a very extreme case of hypermobile Ehlers-Danlos Syndrome at UAB Genetics Clinic. My shoulders, hips and knee caps dislocate often. I've had 3 major joint reconstructions and have had a surgery consultation on both knees, twice on my right knee. I was diagnosed with vestibular dysfunction and Meniere's disease in 2023. I have 80% damage to the right side and 20% to my left side. Then at the end of November 2023, I lost my vision in my left eye. I was immediately sent to the ER to be admitted for MRIs and a lumbar puncture. The MRIs confirmed Optic Neuritis and Multiple Sclerosis. I have multiple lesions in my brain and t-spine of varying ages. I was started on Kesimpta but it's not slowing things down yet. I have numerous doctors appointments, labs, tests, MRIs. I'm 2 hours away from my closest specialists so gas is a killer. The cost of insurance, copays, deductibles, co-insurance, medications, tests, etc are astronomical. I'm no longer able to work so it's been difficult keeping bills caught up plus medical bills.

I deal with severe vertigo, brain fog, blurry vision, tinnitus, GERD, gastroparesis, severe IBS-C, neurogenic bladder, neuropathy, weakness, overwhelming fatigue, difficulty walking, difficulty swallowing, cognitive deficits and memory loss. I have difficulty finding words and describing every day items. I have really bad muscle cramps and involuntary spontaneous muscle jerks that make the affected limb to kick out. I have involuntary tremors in my body when flared or exhausted. I experience extreme pain throughout my body. I have frequent and severe headaches. I have many symptoms that are random because my entire body is affected.