I was diagnosed 3 months ago today. I find myself no longer shaking my head every day wondering if this is really happening to me. I haven't become complacent or accepting of this disease and the fact that I've got it...I just don't find myself waiting to wake up from this nightmare. Or rather, I wake up every morning to know that the nightmare is real and not just some bad dream that will go away the more I pinch myself. Ha, I just realized the irony of that last statement - as I pinch the right side of my face daily to see if any of the feeling has returned!

So, I wrote this last week some time...it is the start of a book that I know I have in me. I've always been told that I should (and would) write a book - but it was always thought that it would be about childhood abuses and whatnot. Just wanted to share it here.....

(the original working title of the book is "Life Sucks: And I Can Prove It" LOL)

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.”
Silence.
“What?”
“Multiple Sclerosis – do you know what that is?”
“Yes.”

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.

~Keri

I'll tell ya', RP, I'm still in denial after 26 years. It's always there, but I always try to pretend it's not... or at least that I can outsmart it.

I really can't imagine hearing the words "you have MS" from a Dr. out of the blue like that.

I feel for you. There are plenty of days I can pretend I'm just fine, because I feel fine, but they are few and far between. Right now, I think I'm into my second flair and its only been 4 months since my dx. Mayve I'll feel better tomorrow, maybe I won't. It's a tough adjustment to make, no matter what you've been through or how tough you are.

I wrote about my dx as well. Somehow it seemed like if I wrote it out it would become more real.

Here's hoping you go into remission (sorry if I'm mistaken and you don't have RRMS).

MS was not even in my radar when I was told that was my situation.

I had been tested for carpal tunnel several years earlier, been put on anxiety med, told to slow down and not be stressed. Then the doc finally thought maybe an MRI might be useful since my sx's just didn't improve.

He gets the results, I get a call to come in to his office, and he tells me, it looks like you have MS, but I need you to get a lumbar puncture just to confirm what the MRI is saying.

Honestly, it was a relief having a name for something everyone thought was just in my head! Well, I showed them! It was in my head - in the form of lesions! Six or seven of them.

It explained my lack of balance, fatigue, forgetfulness, tingly hand. It's okay. Having MS has not been a bad thing. An adjustment, for sure, but I've always had a good attitude about life, and MS will never change that!

Ah...I remember those words all too well, "You have MS." And as she continued talking the tears rolled down my cheeks. When she looked up from my chart and saw the tears she grabbed a tissue, and came across the room to me.

She hugged me and said, "We doctors just say those words so easily, we sometimes forget what a huge impact 3 little words can have." I have loved my neuro every since.

I hate the reason we have this doctor/friend/patient relationship but I really am glad she is my doc!

I think that is awesome that you are going to write about about your experiences with MS. It looks like you are off to a good start.

Thank you for sharing that, Red. You did a wonderful job describing what happened. Keep going, you are very talented.

I'm so sorry it hit that suddenly out of the blue for you. For me, it was an MRI report I received saying that the leisons were possible MS that shocked me. I remember reading it and letting it drop to the floor. I got it before my doctor could call me to discuss what other tests were needed to rule out the mimics.

Great job, Keri! I think is also very therapeutic to put things on paper (and out of your head). I've always wanted to write a book some time too.

I was hit out of the blue too, with almost complete paralysis. The worst part though, I must admit, was the botched LP that landed me in the brain trauma unit for a week, while everything else was going on too.

I think my docs did me a favor by saying only that it might be MS at the time because after that first major attack, I did fairly well in denial for the next 12 yrs. There weren't any meds (except steroids) available then anyway, so why know . . . you know?

Can't wait for the next chapter!

Cherie

We have been dx about the same amount of time, I think. Me in Dec. I too got the phone call. I should have known something was up, when it was the actually neuro calling and not a nurse. I feel for you... I don't have the great advice you probably need. There are so many smart people her at NT who will though. Hang in there. You are in my prayers!