Multiple Sclerosis (MS) - please introduce yourself

Hi @teresasangel - thanks for introducing yourself and talking a bit about your situation with MS. You mentioned treatment with ofatumumab (Kesimpta). How has that gone, giving yourself injections? Have you felt this therapy has been effective for you?

Hi @jakedduck1 - I did not realize you were being evaluated for possible MS or muscular dystrophy. You have a lot to sort out with dealing with multiple illnesses and trying to figure out if the symptoms of numbness, balance and weakness in your legs are for sure from neuropathy, the language issues are for sure from the epilepsy medications, and the dark spot on your brain is from a stroke at a young age, instead of any of these having a relationship to MS.

I trust that the doctor at Stanford will sort all this out for you. Perhaps in the meantime, some of those in this discussion with a history of MS such as @recruiterbreedm @wahoochar @msr2323 @travel4fun and others will also have some thoughts on these symptoms and possible relationship to MS. Hoping they also can provide some input on whether frequent falling is a first symptom of MS.

Have you experienced minor or major injury with these falls you mentioned, jakedduck1?

@lisalucier
I've had a few shoulder surgeries and l many dislocated shoulder reductions but I guess that's par for the course with epilepsy.
I would've thought that if I had a neuromuscular disease, I would've shown more symptoms by now but I don't really know anything about those types of diseases. I'm convinced my falling id seizure and neuropathy related but I appreciate my new doctor wanting to check things out. My appointment at Stanford isn't for 6 months.
Take care,
Jake

It must be frustrating to wait for so long to see a doctor. My early symptoms were vertigo (increasing in severity until I drove off a country road into a ditch) and falls. An ENT doc put me on the path to MS diagnosis almost 40 years ago. Now age 78, with 6 diagnosed concussions/hospitalizations, 2 strokes, additional diseases including sarcoidosis I struggle to self-diagnose whether MS, concussions , strokes and/or aging causes specific on-going symptoms. Recently moved to Texas and Medicare mess keeps me from getting medical care, although I’ve used Medicare in Calif, Maryland, Kentucky and Arkansas, but can’t get help in Texas. Life certainly provides no end to surprises. I wish you all the best.

Hi, my name is Teresa. I have advanced dentist or PPMS which is now advanced. I'm getting comfort care now. I'm confined to a wheelchair right now. My body is on fire. My hands are hard to move. I'm going to. I'm going to a pain doctor on 22 April in two days they're gonna have to have my pain meds again because my pain meds aren't working my bones hurt. I have a rash on my on my body. My left leg is I can't feel it does anyone else feel this way? Or worse

I am a 17 year old patient with Multiple Sclerosis I figured out when I was 16 having it up to a 30 year old, I've tried to make a document of all my symptoms I had wanted to share, I also experience anxiety from my past where I was bullied because I couldn't run from my foot going numb and painfully hurting when I was in 1st grade I wonder if its not from this disease I have had so many chest hug pains and it feels like I cannot do what I wanted too before now that I have these treatments I haven't experienced any more pain until the end of them ending with anger or when I first start the treatment I get really angry I cannot control my mood anymore nor am I walking normally like everyone else and having trouble with school as I cannot think anymore like I could I was diagnosed with a eye problem at 7 years old when my eye couldn't move it came back 9 years later then I was finally diagnosed with MS I am glad I figured out and hopefully with all these test I am doing from my doctor hopefully we all can get a treatment to end this disease..

@davidg17 - hello, and welcome to Mayo Clinic Connect. I wanted to let you know that I moved your post here to where many members have been introducing themselves and a bit of their background with MS from 2016 all the way till the present:

- Multiple Sclerosis (MS) - please introduce yourself https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

Hoping others here such as @teresasangel @recruiterbreedm @wahoochar @westwoman3698 can relate to some of what you shared with your MS experience such as being bullied due to not being able to run, experiencing chest hug pains and an eye problem, and feeling anger and experiencing challenges with mood control. I'm guessing others who have had MS while in school can also relate to how it may have affected them as a student.

Are you still undergoing more testing with your doctor related to some of the issues you were experiencing with MS? If so, has he or she come to any conclusions about the status of your disease and the treatment plan?

My name Tammy and I was diagnosed in August 2025 with Relapsing Remitting MS. Thankfully, I was then able to be seen at the Mayo Clinic and was given the diagnosis Progressive MS. The thought is that I have had MS for the past 8-10 years and it went undiagnosed. I have received “1” infusion of Ocrevus “6” months ago now.

Welcome to this group! It can be quite helpful to hear from others about their MS journeys. Re: the bullying you’ve experienced, don’t forget that someone who bullies is generally a very weak individual who usually is afraid of others doing better than them, seeing them becoming more resilient and successful than they will ever be. I know it’s exhausting to manage your MS plus dealing with added stress from bullies. I would encourage you to try and remember that bullying behavior is the other person’s problem and devote your energy to making life as easy on the one person who matters…yourself. It may be easier said than done. I wish you success.

Thanks for all the support it's just the fact that ever since my infusion I received the 7th time I've experienced even more pain in my back, head and lower knee it just also has been a ice like shock of pain when you get hit with a snowball or your hands out of your window when it's raining going 60 mph they never flushed my iv at the end which they were supposed to but I'm wondering if it's that

@lisalucier I'm not doing much tests as much as I did before my doctor had told me that he's noticed my eyesight gradually staying the same but double vision may stay as if I look a little to the left it stays there but the right doesn't do the same