More than a year ago, my son (now 31) noticed his left leg was weak--it would sort of drag when walking. We thought it might be related to back surgery (microdiscectomy) he had after badly damaging a lumbar disk when moving something heavy, although it was more than 2 years after his surgery. Last winter, he mentioned it again, and also that he was very fatigued and depressed. Chalked the fatigue and depression up to it being January (he's self employed and there's little work at that time, plus he's prone to SAD) and the fact that his first serious relationship ended when his gf made a long-planned move across the country.
He tried a month of chiropractic which did nothing. Then it turned out his ACA health policy had lapsed (his first time getting ACA and what he though was direct deposit of premiums turned out not to be the case). It took him some time to get coverage again and he went back to his PCP who had thought he needed PT. But after doing some reflex tests and checking balance and walking she referred him to neurosurgeon. They had him do a lumbar MRI (nothing) and then a thoracic, which showed loss of myelin.
Last winter the thought of MS had brushed my thoughts but I had shooed it away. After learning about the myelin loss, I started googling but was scared away by multiple myeloma (a family friend died of that) and some kind of fatal myelopathy. They called as soon as the MRI came back and wanted to see him that same day, he ended up with a referral to a neurologist who is reported to be the best MS doctor around (he also has a psychology PhD I've heard) and another brain MRI. Right now MS is the working diagnosis but there's a spinal tap and a neck MRI left to do. The were going to do an EMG but neuro said no point.
This started as sheer terror, not so much now. I have felt so angry as well. He had a very, very difficult adolescence due to an unrelated dx and we had serious problems with his school, social service systems, and eventually juvenile justice systems. Early adulthood was also rocky. He got a GED, eventually built up his business--which requires a LOT of travel (driving--I thought maybe the driving was causing the left leg weakness) and has physical requirements often involving ladders (avoiding for now). The last crisis had been a 2 year legal battle with the state over whether he was required to provide worker's comp to his partners--he won but it cost a lot and there was really concern that his business would go down the tubes.
Anyway, for a long time my usual mental state with regard to him was worry, and the last few years have been such a complete change--then bam. It seems SO unfair.
His cousin (also male) was diagnosed with Lupus at 23 and my mom had Hashimotos (thyroid autoimmune disease) diagnosed at a young age, and his paternal grandmother had idiopathic pulmonary fibrosis which is also believed to be autoimmune, so there may be some predisposition.
Right now he's driving himself really hard work wise thinking about medical costs ($6900 deductible, $250/month premium, expected he will cap his out of pocket every year going forward and need to be aware of what DMTs insurances will cover along with other possible limits).