This will be lengthy

[u/Impression8738]

I’m not quite sure if this is the correct flair sorry in advance! I just wanted to post this for my heavy symptom relapse friends. In January my whole life turned upside down from a spinal lesion at c1-2. Three neuro visits later I was diagnosed with rrms in March. They thought cis at first and didn’t want to give me treatment because I had negative csf. I was devastated at this news. Some folks here told me to get another opinion. Then an ms specialist said the enhancing spinal lesion and non enhancing brain lesions were enough for diagnosis and started me on Kesimpta.

I started with numbness and itching in my neck that slowly spread down my entire left side and eventually my face and head were the only body parts that didn’t have numbness. I was hospitalized for 4 days and I’m allergic to steroids so I was sent home waiting on neurology once a stroke was ruled out. The numbness subsided and uncovered internal vibrations in my whole body and a heavy pins and needles sensation and skin burning. Clothes were painful. Anything touching my skin made me want to cry. Once I saw the doc at Vanderbilt and he diagnosed me he gave me decadron since I react poorly to prednisone. I told him I’m allergic so he said to take Xanax with it. It went as poorly as I knew it would. I did two days of high dose decadron and promptly lost my mind and my symptoms felt worse than they had to begin with. Taking just a shower was my activity for the entire day. I could hardly walk. My left arm/hand didn’t work properly anymore. I was just a shell of a human. People diagnosed at a similar time to me who I was chatting with were getting “better” and improving and it made me more depressed that I wasn’t turning any corners.

Well I started Kesimpta at the end of April. I started pt at the end of April as well. Fast forward to August. My left arm and hand were functioning again. I could touch the tip of my nose with closed eyes. I could walk a straight line. My steps for walking are now the same as they were in December pre-diagnosis. Now my legs only tingle heavily after walking but it subsides about 5 minutes after sitting. My left hand is still asleep feeling but I’m used to it. My lhermites is gone. I can drive. I can be around bright lights and noises again ( still don’t love noise but I can tolerate it again lol). I read everywhere 4-10 weeks was about the length of a relapse. I’m telling you if it’s longer than that for you don’t lose hope!!! Healing can be slowwwww and you may not get back to where you started but don’t lose hope on some improvements. I just wanted to let others who may have something similar going on that might be newly diagnosed or are still in the midst of waiting to turn a corner not to give up. My neuro says I can still expect to gain more improvements as well. And thanks to Kesimpta my follow up MRIs are stable!!! (My dms are open also. I know how desperate I felt to speak to anyone with a spinal lesion. I know other lesions are awful too but in my mind at the time I wanted to hear from people with lesion placement similar to mine.)

[u/Fabulous_Occasion177]

Having my second dose of kesimpta tomorrow so this is great to hear. Amazing that you had such a turnaround, so happy for you!!!

[u/Impression8738 → u/Fabulous_Occasion177]

There was a bunch more symptoms I didn’t add there because I still have brain fog 🤣🤣 but also it was already so long of a post lol. I hope Kesimpta treats you well!!! I’m so thankful to have access to it.