Hi! I’m Female, and in my early 20’s.
I have Crohn’s disease, as well as a grocery list of other health conditions. I’ve been struggling with MS related symptoms for over a year now. My neurologist agrees that there’s something wrong with my nerves, did nerve testing, only found some issues in the upper arm, did an MR of upper spine looking for a pinched nerve, didn’t find anything serious. He prescribed me nerve pain medication, but refuses to test me further, as he doesn’t believe there isn’t a “name” for what I’m dealing with. He tells me there is no origin to my nerve pain. Just that I have pain. Which I think is BS!
I’m at the age MS often develops in people and my other conditions put me at a higher risk for developing things like this. I’ve struggled with chronic numbness in my feet for over a year. I’m talking numbness that interferes with daily activity, and keeps me up all night. I haven’t slept an entire night without one or both feet falling asleep in over a year. At first, I thought it was just nerve compression issue’s because it was just in the feet. But over time, this numbness eventually made its way to my upper arms. Again, usually happening one arm at a time. It happens mostly when I’m sitting or laying down, but not always. It isn’t always directly correlated with laying down on the arm or the leg. Sometimes it happens when I’m standing/out and about. More recently, this numbness has spread to my ribcage. One side of my rib going numb at a time. Then even more recently, it spread to my face, mostly my lips, but all over at times. The other night, I had a terrifying incident in the middle of the night, where all of these areas went numb at once. And I had extremely cloudy vision, like the room was filled with smoke. I genuinely thought I was having a stroke. But there was no drooping of the face, and I could talk, so I didn’t go to the ER. I’ve seen an eye doctor before and they said my vision was fine.
I’ve also noticed slight muscle weakness, as I’ve been dropping things extremely frequently. Like noticeably frequent. It also feels hard to keep my head up at times. Like my neck muscles are giving out. And sometimes when I squeeze my fist, it straight up feels like I’m being electrocuted.
I also have noticed minor neurological/speech issues throughout the year that only seem to be getting worse - such as when I go to talk, the sentence comes out jumbled, or I can’t say certain words without stuttering to get them out. When I use voice to text on my phone, often times, I can’t even get out the sentence I’m thinking in my head. This has been problematic, as my job requires a lot of talking. I’ve also been forgetting very common things, like the names of people I know closely, and phone numbers and spelling and such… These issues don’t always happen, but when they do, they’re very noticeable and worrisome.
I also struggle with vertigo. I have many other conditions that could be causing it, but it seems to have gotten worse alongside these other symptoms. I find myself feeling extremely dizzy throughout the day, almost as if I’ve had a glass of wine and are constantly tipsy. Everything is just blurry and off kilter. It makes it very hard to focus on daily tasks. I also have random vertigo attacks where the entire room starts to spin and I almost collapse/faint. I used to get this every so often, but it’s almost becoming a daily occurrence.
I’m making an appointment with a new neurologist soon, but as these symptoms seem to be getting worse quickly, I wanted to check in with others to see if this has been someone else’s experience too. Or to see if anyone has other advice on what it could be.
I’ve had brain MRIs in the past, but it’s been over three years, so I imagine I’ll need new ones done. I get blood tests all the time for my other health issues, so other causes have been ruled out. I’m just very worried because my doctor told me to go to the ER due to the stroke like symptoms, but they went away the next day. I’m worried I had a mini stroke of some kind, or whatever condition I do have is worsening. I haven’t mentioned MS to the neurologist because I assumed they’d test for it, but I’m gonna bring it up at my next appointment.
If you read all of that, THANK YOU!! I’d be so thankful for any insight you have.