@Sanchez85 

Last reply

Sanchez85

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?
San Marcos, United States
@MamaSmags

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.

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@ducky2020

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

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