Hi. My name is Nichole. Kind of here to vent & relieve some stress I suppose. Not really sure where to start but I am on the path of possibly being diagnosed with MS I guess. I started out with odd symptoms in 2016, so odd that I wrote them down, fast forward to Nov. 2017 where I had a grand mal seizure & landed in the hospital. It was a difficult road with crazy symptoms afterwards of which i also wrote down & gave several different doctors. I was diagnosed with epilepsy while I was still in the ER. They said the symptoms i was having prior were seizures with aura type thing. As my symptoms of parasthesia & other odd symptoms continued I was in & out of the ER or at the neuro office complaining that something was very wrong. I literally had no feeling during sex with my husband, completely numb. The doctors all attributed to epilepsy or probably more likely that I was a lunatic or a hypochondriac! A lady i worked with said Nichole, you have MS (she is married to a doctor) and drove me to the ER. I came back out with Xrays of my spine & more blood tests & nothing was wrong. I met with neuro again, voiced my concerns of MS. He showed me my MRI & showed me a patient with MS. I have two lesions on my brain that i was told is from migraines and i do not have MS. So, i left that day in the early months of 2018 accepting that i have epilepsy. I went off the medication in 2018 on my own i guess I felt that i didnt need it. In 2019 we moved, i was pregnant with our first & it was recommended to see neuro again for followup & i was put on seizure meds as pregnancy & afterwards is a big trigger for seizures. Despite giving a history & all of my notes and tests were sent to the new neurologist at a top notch facility, nothing was ever said about any other potential diagnosis. I continued the medication for about 8 months after our second baby was born. At that time, about march of this year, I started having a dripping blob of white light constantly going down my right peripheral vision. I saw my optician within 2 weeks, he didnt do a whole lot of tests. Just said everything looks great, it doesnt affect your quality of life (it does) so nothing to do about it. Fast forward 7 months of dealing with this dripping light & blurry vision, I had enough so i scheduled with an Opthamologist to get a second opinion. This is where things got strange. Tons of in depth tests with him & all came back great. We talked a bit about my history, epilepsy etc. He said he’s referring me back to neurology but didnt say why. I opted to see one of their neurologists instead of the one I saw during pregnancy at another clinic. I finally got to see the neurologist a month later. I also saw the eye doctors referral stating “epilepsy vs MS?”. Wait a minute, an eye doctor bringing up MS? I saw neuro end of October finally. Give him all of the information that I could remember. He asked about the parasthesia which i had actually forgot about and was surpised he mentioned it. He throws the curveball of testing for MS. I cried because it was so overwhelming seeing MS on the eye doctor’s notes but also having a neurologist bring it up too & to actually want to test for it. I have since had MRI’s done on my brain, orbits, and all of spine as well as two CT scans & the VEP (vision) test. Not even a day or two after i saw neurology, i was hit with numbness & tingling in different areas of my body. My face, hands & feet were the worst. I messaged the neurologist & they put me on Oxcarbazapine which did take away the tingling of my hands, feet, back & face but all the numbness remains. I now sit here and wait anxiously until January 24th to know anything. Deep down I do have a feeling it is MS, like I felt in 2017/2018 but who knows I suppose. If you made it this far reading my story, i appreciate you! If you have any thoughts or if this resignates with you, please let me know. I did read that people with MS do have a slightly higher chance of epilepsy compared to the general population. So could I have been misdiagnosed in 2017? I get myself angry thinking that if it is MS & I was properly diagnosed, I couldve been on the steriods & maybe i wouldnt be dealing all these symptoms, especially my vision. If you have epilepsy & MS I’d love to hear your story.
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