Um...hi...? :-}
 

[WARNING: My sentences are almost always long and convoluted. Sorry for any inconvenience (confusion, dizziness, blurry vision, headaches, seizures, choking sensations, nausea, vomiting, etc.) this may cause. ;-P]

This is my first post, so, um, hi, there! I’m G—texting culture has reduced me to just a letter for a name among my friends & family—and I was dx’d in October 2018, even though I’ve been having symptoms and flares since my mid-20s (I just turned 55). Since I was only dx’d a little over a year ago, I’m currently dx’d with RRMS, but I seem to be just progressing pretty quickly without discernible relapses for the past year—pretty sure I’m in SPMS. When I asked my second-opinion neuro how many lesions I had in my brain (none in my c-spine) he would only say “less than 10.” I recently had an MRI and a neuropsych assessment, still need to schedule the PT my neuro ordered and then it’s off to a new neuro (my neuro is on maternity leave, but she’s kind of a ditz, so I’m hoping the one filling in for her is better).

My sx’s were mainly cognitive (except for bladder control issues), but now I’m having trouble walking—my hips don’t seem to be attached to my legs as securely as they were a year ago—and on my bad days, it’s all I can do to hyperfocus on reading or watching something (Netflix is my friend) to distract me from intense pain and how-can-gravity-be-increasing-only-for-me?-type fatigue. I was a counselor getting a second MA in child & adolescent counseling (long story why) when I started seeing double all the time and had The Bladder Incidents (at my internship, no less). And, I started completely forgetting I had client appointments and course assignments and case notes to write, and would “lose time” (suddenly, it seems, it’s an hour later than I thought it was) and started getting confused easily, especially while driving (familiar areas suddenly don’t look familiar, and I can’t remember how to get places, like the grocery store, without GPS). So, I withdrew from the MA program and am now trying to get SSDI, which I applied for in 2014 during a year-long flare (although I thought it was fibromyalgia, which I was dx’d with in 2003), but was denied. This time, I’m working with an attorney.

I started on Tecfidera right after I was dx’d, but my neuro is switching me to Rebif because I could never remember to take the first dose, as I had to take it with food (or I’d get seriously nauseous, so I took the second dose at bedtime), and I typically only eat dinner (I’m a tiny person—5’0’ with little bird bones—so I don’t need a whole lot of food). Still waiting on the insurance-doctor’s office-pharmacy coordination, so I haven’t started on that yet. Not looking forward to the possibility that it’ll make me feel like I have the flu, when I already feel like I have the flu most of the time.

Anyway, that’s my sad tale of woe. Trying to be present in each moment, unless I hurt, and then I get that old Ramones song in my head (“Twenty, twenty, twenty-four hours to go-o-o...I wanna be sedated”)...

Welcome to NeuroTalk Gessa. Sorry you have a reason to be here but there's a lot of nice folks here to share your story with. Some of them will be along shortly to welcome you and share their experiences. :welcome_sign:

Hello Gessa,

I live in DeKalb County in Illinois. Welcome to the forum. I also have MS, and I'm 60 years old. I'm glad you have an attorney for your SSDI claim.

I also applied on my own, and the claim was taking forever so I hired a social security law firm and they got things moving along for me.

I was approved about a year ago, and I'll finally be on Medicare in April.