Well, "cheerleader" mentioned I should post here....so here I am!
I recognize some names here from another forum...so hi!
This is long...but I realize as I sit here, nearly 4 months into this out-of-the-blue random diagnosis....I will share...
Let's see - I'm new to ThisIsMS and MS altogether.
On December 22, 2007, the right side of my face started feeling weird - within a few days, it was entirely numb from chin to scalp - including my tongue - HALF of my tongue was numb! It is very trippy (sad to say, I still have that symptom).
Anyhow, I was out of town for the holidays at that point, and didn't think much of it. My jaw (TMJ) problems were acting up and so I figured it was that. When I got back home (Los Angeles), right before New Years, I noticed some other weird stuff - like I was exhausted. I figured traveling had gotten to me...especially since on my outbound trip I was trapped at LAX (airport) for a good 21 hours! I would go out on an errand and have to go home after an hour or two – because I was just fall-over tired. Outrageous. Every once in a while, usually while driving, I had a second or two when I felt “dizzy” and my vision flickered. Thought nothing of it.
January 2, 2008 – my dental specialist is finally back at his office. I go to see him…he tells me that my jaw is not causing the numb face (at this point, I hadn’t put together the exhaustion or vision stuff with this. I had actually forgotten about those things). He says I should get to a neurologist sooner rather than later! Okay, so now I’m convinced I have a pinched nerve in my face/head somewhere. Still not thinking much of any of this really.
January 3, 2008 - I have double vision and I can not drive because the vertigo is so unbearable. I’m told to go to the ER – where I had to ask someone to help me fill out the forms because I can’t make out anything! I have a CT scan. It shows nothing. Okay, stop laughing – it does show I have a brain! They give me pain meds and send me home. I didn’t want pain meds – I wanted to know what the heck was wrong with me. Fortunately, I had taken my dental dude’s advice and had already scheduled my neuro appointment for January 4th…
January 4, 2008 – my friend drops me off at the neurologist’s office. I hand the receptionist my IDs because I can not fill out the form. At this point, I swear, the room is moving one way, the floor is spinning the other way, and I need a seatbelt just to sit in the chair. I meet the neuro…..he does an exam. He asks all sorts of things that I hadn’t thought of (bringing up the exhaustion – now hereto referred to as fatigue, etc.). I finally say, “So, do you think it’s a pinched nerve?” – to which he casually tells me that he thinks I had a stroke and it is affecting my brain stem. !!!!!!!!!!! Did I mention that I was 31 yrs old at the time??? He sends me for an MRI immediately – and by immediately I mean that I was in the machine within 30 minutes.
Fast forward about two hours:
It was a Friday afternoon when I hung up the phone. Or rather I hit the “off” button. Then I sat there. Did he just tell me that a UFO landed in my front yard and aliens were heading to my front door? I think he did. I need to call my friend and let her know. But what exactly am I letting her know? Would she believe that aliens were in my driveway? Would she even understand what that meant? I know that I didn’t understand – but more importantly, all I really knew was that I needed someone else to know.
Okay, so he didn’t exactly say that – but he might as well have said that – because what he said was even more distressing, made even less sense, and was more random than aliens.
“You have MS.”
“Multiple Sclerosis – do you know what that is?”
The conversation lasted exactly 12 minutes and 37 seconds. I always wondered if the timer/counter on a phone was an important or useful feature – and now I knew that it was. Surely he said more than just those few words – after all, a lot can be said in 12 minutes and 37 seconds. But what did he say? I remember his voice and the matter-of-factness about it. I remember asking two distinct questions (I may have asked and said more, but it escapes me). “Can I still have children?” and “What’s the prognosis?” Of course, I asked these questions but barely heard the answers.
I was sitting on the sofa. At least my body was there as he spoke to me. The rest of me – my mind – was nowhere to be found. (Thinking about it now, this was a state that I was going to have to get used to.)
I had been sitting and waiting for a call from the neurologist. When I had seen him earlier that morning he told me that he believed I had a stroke and that it was affecting my brain stem. He had immediately sent me to have an MRI that instant.
While I laid in the machine for an hour, listening to the loud banging surrounding me, I tried really hard not to think about what was happening. Of course, this was easier said than done, as the facial numbness I was experiencing was rapidly becoming just the tip of the iceberg in terms of my symptoms. Who knew that vertigo and extreme dizziness would feel worse when in the laying down position? That hour seemed like a lifetime....though I was quickly transported back into the moment when the test was done. The imaging facility would not let me leave right away; they wanted to call my doctor first to discuss something. Now I knew I was in trouble.
In the hours I waited for him to review the MRI report I tried to remain calm. I was 31 years old...what did he mean that I had a stroke? Despite being able to access any and all information at my fingertips (sometimes our relationship with the internet and world of knowledge is not only a blessing but a curse), I chose not to spend my time researching strokes and brain stem injury. It was all too surreal. Naturally, as I was struggling with double vision at the time, playing with the computer seemed too difficult without making the other symptoms much worse. What happened to the facial numbness just being from a pinched nerve somewhere in my face? Though the doctor had dismissed that notion hours earlier, I had not let go of that thought. Stroke? What on earth was he talking about? And now he's talking about Multiple Sclerosis? Suddenly stroke didn't sound so scary.
He had never mentioned MS as an option. Stroke was the front-runner, migraines being second at bat. But MS? Surely this was a dream.
I am on a DMD - I used Copaxone for 5 weeks and then switched to Tysabri. I have my second infusion on May 9th. My medical records have been sent to Johns Hopkins as I really would like to undergo the HiCy/Revimmune treatment. I saw my neuro this past Tuesday and I was told that I was declining rapidly... I believe he rated me at least a 3 (or 3.5) on the EDSS. Less than four months ago, I was at a 0. This is unacceptable!!!
If you've made it this far....thanks for "listening"...