I was diagnosed with MS in July of 2018, but can trace symptoms back much farther. I was diagnosed With Hashimoto's Thyroiditis in 2015, I had sore joints and traveling numbness from my feet to my hands. Saw a slew of medical professionals and got on a regimen that seemed to help for a while. As my TSH levels would fluctuate I would experience the all too familiar traveling numbness. In the summer of 2017 I had a case of double vision, but I was far too stubborn to see a doctor. Eventually my vision corrected itself and although I had tingling and fatigue I managed. In May 2018 I woke to pain in my left elbow and firebolts of tingling numbness shooting through my forearm and hand. 3 of my fingers were completely numb and I had a difficult time gripping things. I reluctantly went to the doctors and was sent for MRI which revealed a "tumor" on my spine and I was referred to a neurosurgeon. He ordered additional MRI's as my physician did not order contrast and did not check my brain. Within 15 minutes of exiting the MRI machine I was directed to immediately go to my neurosurgeons office. Naturally dread set in as I thought for sure it had spread into my brain & I was on borrowed time. I waited what seemed like hours but in reality was twenty minutes & the doctor brought me into his office & pulled up my scans. He then broke the news that my surgery was canceled (which I was not even aware of mind you) & that I had MS. Next came the explanation that he couldn't actually diagnose me, it had to be a neurologist that specializes in MS. After waiting several months and several failed attempts to find a specialist, I was able to locate a fantastic doctor about an hour away from me.
I met Dr. Katz in July 2018, he immediately began me on an infusion of methylprednisolone which brought many of my symptoms to a halt, including the dreaded MS hug. I started a regimen of baclofen and gabapentin for my remaining pain and discomfort. I started Ocrevus that September 2018 and have been pleased with my treatment.
The most difficult thing for me personally is not being capable of living the life I did before MS. Ive been seeing a therapist recently and the combination of that and the use of Cymbalta has been life altering. Combine that with my recent participation in a newly diagnosed MS group & I am finding a new normal.
If I could give one piece of advise to anyone who is newly diagnosed it would be to take care or yourself. Family, friends & loved ones will undoubtedly research and suggest a unending list of things that could “help”. They mean well but this is your body and life, find what works for you. Don’t feel pressured to do what others tell you, not even your doctor. They work for you and if something isn’t working be your own advocate. The other suggestion I would make is to find others in your area that have been affected, they are your biggest allies, no one can understand what you go through better than your peers. I refer to them as “my people”, good days and bad they have the understanding and experience to relate to you in ways like no other.
Well I am on here to hear from others and offer my support and experience in dealing with all of this.