My Multiple Sclerosis (MS) Story

It all started with 2 falls down the stairs and 1 fall stepping down out of my front door in early 2005…

I had always been a graceful person with good balance. In fact, I took gymnastics as a child and spent my teen years in dance classes. I also surfed, skied and did numerous other things that require good balance very well. Because of this, my initial thoughts were not that something might be drastically wrong me with me. Instead, they leaned towards the notion that I should stop wearing the cute strappy wedge heels I had been wearing all 3 times, and of the pain I was now experiencing in my left knee.

Then, other things started to seem off to me. I started having vision issues—seeing things in my periphery that were not there, starting to feel more frequently off balance, frequent numbness for no apparent reason in my left side. I was also experiencing an increase in depression and lethargy, and had started to get migraines for the first time since my teen years. Did this drive me to the doctor to push for an explanation, no. Part of me thought it might be part of my aging process (I was 35 at the time); and, frankly, part of me was afraid to ask what was wrong.

Then came the day I was on the phone with a friend. I was just not myself and she could tell so she asked what was wrong. I began to tell her about my recent struggles. After I had told her everything, she asked me to do her a favor and go see my doctor and ask to be referred to a neurologist. After I picked my lower jaw up off the floor, I asked why. She said she didn’t want to alarm me, but that my issues sound like hers, and wants me to get checked out just in case. Our friendship was a fairly new one, so I had no idea what she has, but promised her I would make an appointment the next day.

The initial appointment wasn't bad. My primary care doctor and I discussed what had been going on and she tested my reflexes and strength and a few other things. I learned that my left side is much weaker than my right side, that my reflexes did not respond as they should in all areas, and that seeing a neurologist was recommended. I left her office feeling relieved that I wasn’t losing my mind, but worried about the neurologist visit. She declined to tell me what she suspected, and my friend was still not talking. My doctor called to make the appointment with the specialist herself to ensure I got in quickly, so there was just a week to wait.

My first neurologist visit I tend to refer to as the circus show, and I was the main act! I was asked to do things like run and walk down the hallway, hop on each foot, and do numerous things you would usually expect to see in a roadside sobriety test. I was not successful at any of them—thus leading me to realize that if I ever find myself being given a field sobriety test I am in big trouble fully sober! Though I didn’t leave this appointment with a diagnosis, I did finally have a possibility, Multiple Sclerosis. I was scheduled for an MRI and a spinal tap, and I was on my way.

MRI day arrived. I’d had one before, for my knee, and it didn’t go well. I went in feet first, but I am short and ended up almost entirely in anyway. The prospect of going in head first was horrifying, especially since I'd be in for longer! Thankfully, they are very sensitive to this and offered me sedation! This meant arriving earlier, and bringing a friend to drive me home (thanks Shannon!). At first I was very nervous, but was fine after they gave me the little white pill. I don’t recall exactly how long the MRI took, and that is FINE with me. No diagnosis yet, more to do.

This is Spinal Tap! I say that in a humorous way (and I still love that movie), but let me tell you that a spinal tap is not funny in any way! First off, just the thought of having a needle stuck in your back is not pleasant! I had to really psych myself up for this day. I was supposed to only be there a couple of hours, for the procedure and then for some observation after, but ended up being there almost all day. This was thanks to me getting what is known as a Post Dural Puncture Headache or a “spinal headache.” I was given pain killers, and then spent the rest of the day laying on my back in one of the treatment rooms. Thankfully, as promised, the headache and accompanying nausea had mostly subsided by the end of the day, but this is definitely something I never want to experience again if possible! Now I began the wait for a diagnosis.

And the diagnosis was? As suspected, Multiple Sclerosis, specifically Relapsing-Remitting MS. So many things went through my head. I felt relief that I had an answer at last (many people with suspected MS end up in a prolonged state of limbo because they cannot be definitively diagnosed for various reasons). I felt fear about what this meant for the future. And I felt so many things in between. It was time to begin some serious research! My first step was to go home and call my friend and let her know the final result. She was not too surprised. It is what she thought I have, what she has. I cannot begin to explain how wonderful it is to know someone who can walk you through EVERYTHING!

When you get a diagnosis like this there are two things you can do. Learn to cope or let it derail you. I chose the former. It is an ongoing uphill battle.

First off, there are the long term implications. The bottom line is, MS is a disease that has no real cure; and, despite the relapsing-remitting diagnosis, a large percentage of people with that diagnosis end up with progressive MS later. I choose to emphasize that, because I think it is better to accept what may happen then to “think positively” in such a way that you ignore the implications of your situation. I would rather acknowledge the fact that things connected to MS may eventually lead to my death at a younger age than without the MS, than to go through my life pretending everything is normal and ignoring reality. I have reached a point where I am mostly at peace with that.

And then there are life adjustments to make. Many things I've had to learn the hard way. When I got my diagnosis my doctor told me I should avoid high-heeled shoes from now on. I still sneak them on occasionally but it is rare and I am careful. One day I was late for work and needed to catch the next bus, so I ran. I fell, hard, and was helped up by a man likely 20 years older than I—a man who, upon first glance, the old me would have deemed far more frail than I—lesson learned, don’t run anymore! And so on. Some things are harder than others. I love to sit in the Jacuzzi, but heating up your core temperature when you have MS is bad, so I only go occasionally, when it is not a super hot Jacuzzi, and alternate between soaking and sitting on the side. Cutting stress out of my life has been one of the biggest challenges—I am a stress magnet, and this will likely be a lifelong battle...

photo credit: mtsofan via photopin cc
photo credit: mtsofan via photopin cc

Finally, there were treatment decisions to make. For now, I've made the choice to skip the potentially preventive medications because due to likely side effects. Steroids for a week during a flare-up are one thing, but weekly shots followed by the potential of injection site reactions and flu-like symptoms for multiple days just is not something I am willing to do without a higher rate of success.

In December of 2006, I had a flare-up. I was house-sitting for a friend, and using their car while doing so, and to make a long story short having their dogs sleeping next to my head all night led to waking with major allergy issues which lead to a major sneezing attack while driving to my place to pick some things up, which lead to my foot slipping off of the brake while coming to a stop at a red light. It was not a bad accident, but getting in an accident in a friend’s car is a stressful thing, I felt so bad! I turned around and went straight back to their place, tried to reach them, and then proceeded to melt down. The stress had my hands shaking (I was already in a high stress place due to money woes), my whole left side went numb, and my head started pounding. I called my neurologist and he asked that I meet him at the hospital right away. I had pushed myself gradually towards a flare, and the accident was the final blow. A new MRI later showed a new lesion. Not good! It was time to rethink everything.

Having a rough year made me realize I needed to change the path my life was on. My current way of life was causing me far too much stress. On top of that, I had gone through a shift with my diagnosis—one of those “life’s too short” things. The combination got me thinking, why was I living a life that was not working for me? I won’t go in to details, as there was so much thought and self-analysis involved, but the end result was leaving Los Angeles. This has turned out to be the best decision I have made in ages. My quality of life has increased an immeasurable amount, and the reduction in stress and other things have meant so much for my health, as is evidenced by the fact that I have not had a single flare-up since I left! In so many ways, I view being diagnosed with MS as one of the best things that ever happened to me.

Everyone please remember how much we need a cure for MS!

photo credit: mtsofan via photopin cc
photo credit: mtsofan via photopin cc

Comments 26 comments

Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware

Hi Violet! It is a pleasure to "meet" you and I find your MS journey fascinating. You were very wise to reduce your stress level as that is often the hardest thing for people with MS to realize.

I had to chuckle about falling down the steps, as I remember berating myself over the fact that I lived 30 some years without ever falling down the steps, but in my 30's it occurred 3 times. It drove me crazy, but now I can joke about it.

I'm very interested in your migraines in connection with your MS. I hope you get a chance to write a little more about it.

I am looking forward to any future articles you write. I like your writing style very much and you have so many positive and informative things to say.

~Jen


Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

Thanks so much Jen!

As for the migraines, my doctor said it is one of those things that many people with MS get. I have actually had them since I was in my teens, but they had gone away for so long. Getting those in my teens and some numbness episodes in my teens made my doctor wonder if my disease had begun in my teens and just went undiagnosed for ages. Do you get migraines?

So glad you understand the frustration of falling down the stairs, though I don't wish it on anyone!

-Valerie


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware

You're welcome Violet. No, I don't get migraines. I have a couple of friends who do and based on my knowledge of what they go through, I sure hope I never experience one! I think you are the first MSer I know about who has migraines with their MS. Its like two neurological disorders at once right?

~Jen


Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

Essentially, yeah. Fun, huh? As it goes with many things for MSers, there is no guarantee the migraines are MS connected, but he thinks it is likely.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware

I think the National MS Society does talk about migraines in association with MS. Been a while since I read it though, I could be mistaken. I forgot to mention that I also have Blindsided, but I got it on tape cassettes because I was having trouble reading at the time. I enjoyed hearing his voice and that of his wife, Meredith Vierra.


Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

MY favorite of all of them is Fall Down Laughing, I really recommend that. :)


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware

That was my second choice. I was planning on getting a copy at a book signing he was doing for the MS Society, but was too ill to attend. I'll have to remember to pick up a copy. Thanks for the recommendation.


grannyturnip profile image

grannyturnip 7 years ago

I also have migrains with my MS and I started having them long before my diagnosis. It is very confusing trying to figure when the MS started but it was at least five years before the diagnosis in my early fifties. I have lost most of the use of my right leg. I have no toe lift but was able to walk with crutches until my heart attack last August and triple bypass in November. I lost my core strength and have been totally in my chair since. Physical therapy especially water therapy is building back that core strength and I am walking a little with my walker. They tell me this is relapsing remitting but I find it has just slowly progressed since the diagnosis and I have never really had a "relapse". I find my symptoms to be atypical in many ways but I know we all have different symptoms. I have been on avonex injections once a week for many years and I have no idea what works and what doesn't. It was good to read your story and I hope things keep going well. We all have to support each other.


Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

I agree, we definitely have to stick together. Though I don't wish migraines on anyone I am glad to find someone else who has had them as part of their diease progression. It definitely sounds like you have switched from Relapsing Remitting to Secondary Progressive, I have wondered at times if that is where I am headed because I have started to notice more cognitive issues than I originally had. I need to do some research on a drug called Low Dose Naltrexone (http://www.lowdosenaltrexone.org/ldn_and_ms.htm). I have a friend who knows someone that began treatment with it and has been able to abandon her wheelchair after many years of being wheelchair-bound, and that is major!


Inner Harmony profile image

Inner Harmony 6 years ago from Costa Mesa, California

Hello! I'm Cindy and I have Multiple Sclerosis also. Have published a few hubs on my experiences, the day of diagnosis and a poem about the nightmare of MS.

I really enjoyed your hub!! I like your writing style. Keep 'em coming! :)


Violet Valerie profile image

Violet Valerie 6 years ago from Westminster, Colorado Author

Thanks Cindy! I will have to go read you hubs. I keep meaning to start writing again, but life got a little ahead of me a while back and I have yet to catch up!


claire louise 5 years ago

hi valerie..i am an m.s sufferer ..i have had the illness for around 16 years now.I have been told i have relapsing remitting m.s but have been lucky as far as im concerned .I was diagnosed at the age of 18 ..i had not long had my first child and experieced double vision and one allmighty eppisode of vertigo and sever vomiting and numbness ..that was the most scary thing i had ever been threw .i quite quickly had variouse other symptoms of m.s like a wandering eye..?? i dont know if anyone else has had this ..??one of my eyes would not look to the front but round the side of my head instead,,???then i sufferd the loss of use of my legs which thankfully didn't last too long...over the years i have had ups and downs and both physicle and mentle fights with this thing that has taken up residence in my body..but i feel lucky as at this moment i am still able to walk unaided ,i cant see as good as i could ,,but who can as they get older .!!lol..and im going to be a grandmother early next year ..which is something i thought i would never get to see ..i hope that there will be a cure soon as i would love to be around for my little girl when she becomes a mum too ....


Violet Valerie profile image

Violet Valerie 5 years ago from Westminster, Colorado Author

Thanks for sharing some of your story claire louise! I think hoping for a cure is what many of us MSers devote much of our time to, and that is a lot of hope towards one thing, the karma will get us there eventually!


nclark140 profile image

nclark140 5 years ago from Deep Dirty South

I didn't realize how many of us are here. Your story hits home on so many different levels!


Violet Valerie profile image

Violet Valerie 5 years ago from Westminster, Colorado Author

Thanks! Sorry it took me so long to approve your comment, it has been a rough few months!


stephanie 5 years ago

i lost my dad due to complications of ms and ive got to say for all of those who have it i support you guys!!!! and i hope they make a cure quick!!!! my dad past away due to kidney failure which was he had already before finding out about ms but having ms made it so much worse! my dad also had major migraines due to ms very often when he was here. he had numbness and many other symptoms god bless y'all and i hope all things for yall get better!!


Violet Valerie profile image

Violet Valerie 5 years ago from Westminster, Colorado Author

Thanks so much for your kind words! And my sympathies for the loss of your dad.


Patsy Morgan 4 years ago

Pleased to meet you Violet. My name is Patsy and i too have remitting remission MS. Never knowing from one day to the next what i will be able to do is a challenge. Just wanted to say how much I enjoyed your article and what a help and eye opener it is. I'll show it to my hubby who is my care giver. He is always interested in what all i cope with and how he can make it better/

Again

thanks

Patsy


Violet Valerie profile image

Violet Valerie 4 years ago from Westminster, Colorado Author

Thanks Patsy! I wish you much luck and health on your MS journey.


Patriette profile image

Patriette 4 years ago from Las Vegas, NV

Hi Valerie,

Thanks for sharing your intersting MS story. I can relate on many levels, as I'm another MSer only I have Primary Progressive. It's a pleasure meeting others with MS for supportive exchanges while seeing how others cope with chronic illness like ours. Check out my Hub on MS when you get a chance. Voting UP and interesting!


Violet Valerie profile image

Violet Valerie 4 years ago from Westminster, Colorado Author

Thanks, and nice to meet you! Off to read your hub now. :)


Yvonne Decelis profile image

Yvonne Decelis 3 years ago from Boston, Massachusetts

Great hub Valerie! (I also have MS (& Fibro) and am writing a book about it.) Voting you up & interesting now...

:-)


Violet Valerie profile image

Violet Valerie 3 years ago from Westminster, Colorado Author

Thanks! Would love to hear about the book when done! Blessings to you!


Yvonne Decelis profile image

Yvonne Decelis 21 months ago from Boston, Massachusetts

Thank you for writing this here - I voted you up and interesting. Check out my hubs if you get a chance ok? I am going to "follow" you... (on hubpages).


Violet Valerie profile image

Violet Valerie 21 months ago from Westminster, Colorado Author

Thanks Yvonne! I am following you now and will definitely check out your hubs!


Karine Gordineer profile image

Karine Gordineer 19 months ago from Upstate New York

Violet, thank you for your beautiful, honest sharing of your experience with MS. I had a friend with MS a while back but you would never know that she had it. I know that she worked very hard to keep herself healthy, stress down and I know she also worked hard to have a very good attitude. I applaud your strength and your courage!

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