EditedLast reply


My symptoms, It's getting somewhat more real

Hi, I just joined, I was happy to find this place, and thought to introduce myself and give you a short intro through my story. English is my second language, so please forgive my grammar. I recently had new symptom, but I'll start at the begining. I have been diagnosed in 2019, but I had first symptom in 2015 and didn't know it. I am still functionable half a year ago I did Angel's Landing hike and last month I did another difficult hike up in the mountains that a normal person would struggle with. So how do I even qualify as an MSer. Let me tell you and you judge for yourself. Maybe you'll have a word of advise for me too. First it all started in 2015 with roof of my mouth numbing up and numbness spreading to my cheek and then nose and then receeding. I ignored that, partly because I didn't have insurance to pay to get checked out. Numbness in the mouth stayed but no other symptoms. Fast forward to 2019 and my vision blurred. They did MRI and it lighted up as a Christmas tree. They said multiple T2 leisions, and I think that means too many to count. This is when I started having bad migranes, ice pick type of headpain, and I had charlie horses on my left leg at that time too. My legs burned badly or felt cold and hot from toes to torso. The spasticity went away in a couple weeks and the burn sensation in couple months but the migranes and some vision loss on one eye stayed. They put me on Ocrevus and I changed up my diet after trying different diets from Wahl's to OMS to best diet, but I should be honest and say I just started eating a bit cleaner that's all. I went like that for about three years till September of 2021 and I got a rare symptom crazy strong face pain which turned out to be trigeminal neuralgia. Let me tell you that hurts inhumanely. But thanks to a drug carbomazepene it was taken under control, no pain whatsoever, except that I have to keep taking it dayly. Thankfully I managed to reduce the dosage nowdays as compared with what I was taking it then. The migrane stayed though, sometimes being nearly constant, sometimes fading into the background. I also started having shooting pains from shoulder down my left arm, very light ones but it bothered me. So by then I got numbness in my mouth (nbd), some permanent loss of vision in one eye due to optic neuritis, migraines, occasional light spasticity and trigeminal neuralgia that I could deal with drugs. I was wondering what my MS was because I didn't have motor function issues or heat sensitivity or tiredness, the classic ones. They originally classified me with RRMS purely based on my history and the MRIs, they didn't do spinal tap to this day. And finally, probably couple weeks ago, I woke up with the partial numbness of my fingers on the left hand and numbness of toes on the left leg. And it is weird and worse than I thought. For example typing on phone or keyboard is quite annoyingly difficult and so is feeling my way when walking. Recently for the first time I started feeling the heat somewhat, when previously it didn't matter. All my symptoms except the trigeminal neuralgia are on the left side of my body by the way. So my MS symptoms history has been kind of different than most people until now but with limbs getting numbness I think it's not that special and I am in the right place here. Would be interested to hear if someone had migrane like mine or trigeminal neuralgia. How did you cope with numbness, I am an office worker. Good to be hear among other MSers. Looking forward to make connections with you. Ruslan

Welcome, Russian


Thank you, Katmar