Frustrated
I got diagnosed in October 2025.
In 2019 I woke up one day paralyzed and couldn’t move for 24 hours. I didn’t do anything after that but about a month later I got up and my legs wouldn’t move so I was paralyzed from the waist down. it happened again, one more time after that and then never again. since then I have had constant random leg pains.
One day I suddenly got pain in my neck, which led me to having a MRI done on my neck. my MRI came back abnormal, but they couldn’t tell me why. I was sent to multiple neurologist to find out I had a lesion in my spine. Next MRI was my brain, where I had small lesions. I was told at first that I had transverse mellitus or clinically, isolated syndrome. But the neurologist I had was such a jerk. I ended up moving to a different doctor now having a spinal tap done and more MRIs my new neurologist had trouble figuring out what was going on or what I had. She had to take my case to her colleagues where multiple doctors decided that I have MS and this was caught early. I’m frustrated because I have random leg pains sometimes I have a lot of fatigue or trouble getting up from bed because my legs feel like I have bricks sitting on them and I’ve had times where I get off balance or lightheaded, driving or brain fog. I am now starting to get tingling in my toes and sometimes my fingers. This isn’t a constant thing but more random. She now says this is not symptoms of my MS. so if this is not symptoms of my MS, I’m frustrated cause I have no idea what the heck it is. Has anyone had something similar go on or thoughts on this?

MS, and other autoimmune disorders are so hard to determine and mitigate because tgey present so differently person to person. My Neurologist is always reminding me that I can have things going on that have nothing to do with MS. Yes, I have tingling in my R hand and R foot. I have found that Kesimpta, although not supposed to help with symptoms, has decreased the tingling. I also find that when I have abnormal sensation (Dysethesia), what works for me is Aveeno anti-itch cream. When I have what I think are MS hugs, I take 2 quick breaths in, 1 long exhale. Repeat 4-6 times. You will become the expert on what coping mechanisms help/work for you by trial and error. Hope you get answers re: the cause of your symptoms. Take care.
My feet and tingle off and on. It is like a neuritis. In my case I have had MS 50 plus years so as far as I can tell from being my own advocate it is MS. I can tell you it is frustrating because at my age I know almost as much as a neuro knows when it comes to MS. Most doctors know very little about MS issues as everyone is so different. I recents to beg for steroids to stop optic neuritis from going nuts. It is hard to get them to listen. Good luck on this journey