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MS and What Scares Me Most

Updated on April 24, 2009

What scares me most about having MS is the constant changes that occur over the life of the disease. You begin with one set of fears and by the time you've been diagnosed for a bit of time, you find the fears are reduced substantially.

Take for example what terrified me the most before I received official confirmation of MS it was my

Fear #1

Being told I had "something". I didn't know what the something was, but for years it was a gnawing feeling I carried with me, that something wasn't quite right inside of me. I could always ease those fears by telling myself I just had a weak immune system.

I remember going to doctors here and there with certain complaints, but no one ever thought I had a "condition" per se. General tests were run, but always came back negative. It was easy to remind myself that as long as I didn't have anything with a name, I was alright.

All that changed after a minor car accident caused me to become incredibly dizzy. So dizzy that I actually had my husband take me to the emergency room. It was there that my first fear was finally confirmed. The attending neurologist, suspected I had MS. After a thorough examination and tests I had never heard of before, he suggested I seek out a neurologist for further tests and consultation.

"Oh no", I thought, "something with a name". Although I told myself there was no way I had MS, within a month, I received an MS diagnosis. It was confirmed shortly thereafter when I suffered at least two different attacks in totally unrelated parts of my body, which lasted for an extended amount of time. Not to mention the plaques that appeared on the MRI which were deemed consistent with MS and the abnormal response on the evoked potential test.

So, there I was 33 years old having to come to terms with the fact that I had something called MS.

Fear #2

After adjusting to the diagnosis and starting the long journey of finding out exactly what MS was and how my body attacked itself. I ran into my second fear

I was afraid I would eventually become secondary-progressive

This fear was especially strong in the early years because my doctor told me it would probably take 2 years or so to determine which type of MS I had. I was diagnosed with relapsing/remitting MS, but if the remissions stopped and the progression worsened, I would be moved in to the secondary/progressive stage.

Every new attack, every tiny symptom scared me. Would it go away? Is this new symptom indicative of something bigger? You worry and research and research and worry.

Finally enough attacks occurred and remitted so that my doctor felt confident enough to tell me he thought I was relapsing/remitting. Whew! What a relief that was.

Along the way I have had to face many fears I would have never known I had, if it wasn't for having MS. That is except for ONE

Fear #3

My Fear of Needles

What's the worse thing that can happen to a needle-phobic, the nightmare of all nightmares? That's right having to give myself daily injections.

It began with the newly approved medication, Betaseron. I quit that after 8 months because of side effects and then waited a couple of years before I began daily injecting Copaxone.

You know they tell you the needle-phobia goes away in time. Well, that wasn't true for me. Everyday was like the day before. Even after 7 years of the injections, I was still scared to death to go through the daily injection. At times it could take me a good two or three minutes just to stick the needle in. I would hesitate out of fear and remember telling myself, "do it NOW . . . ok, do it NOW!" I would keep repeating it to myself until I finally did it. What a way to start the day, as you can imagine.

Most folks ask others to do the injections when they are scared, but that scared me even more because I felt I could control the medication better since I knew when the pain was increasing. (As you can probably tell, Copaxone isn't the easiest of medications to inject. It can cause injection site reactions, and after a while, the site areas can become sensitive.) So I had to do it myself, which meant I had to conquer my fear each day, no matter how long it took.

I don't think I'll ever get over this phobia, I just try to adapt to it. For instance, I don't look when I have blood drawn. I concentrate instead on relaxing my arm and letting the tech do their thing.

I have to have dye-contrast when I have my MRI's as well. Yep, another needle. I don't look then either. It helps . . . a little.

So that leaves just one more major fear to cover.

Fear #4

I'm afraid I'll lose the use of my legs.

Now this is a biggie. No doubt everyone diagnosed with MS thinks about this at least occasionally.

Leg use represents freedom, even decreased leg function is acceptable, as long as one can still get around most of the time.

I went 13 or so years without any lesions on my spine that affected my legs. I went a number of years, with NO changes at all, except for minor brain atrophy. Then out of the blue, my MRI showed a new lesion in the area where leg movement is effected. My neurologist explained that it was no wonder I had recently experienced leg problems and an inability to walk. "Just great!", I said.

So now I'm facing my biggest fear to date. I have times when the lesion flares up but thankfully it goes away and my ability to walk returns.

Of course I don't know what the future holds, but I have now started investigating the what if's, just in case.

Many people survive and get around without the full time use of their legs. If need be, I know I can do the same.

The Good News

I do have a good record built up. Going on 16 years and still relapsing/remitting. Secondary-progressive MSers are often in wheelchairs or using scooters. Staying relapsing/remitting means I may eventually need to use something for the short term, but no doubt I will remain mobile enough to accomplish the more important things of my life. That thrills me!


MSer Describes Losing Leg Strength


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    • Jen's Solitude profile image

      Jen's Solitude 8 years ago from Delaware

      Thanks for your encouraging comment LondonGirl.

      So sorry to read about your mother in law though. They are finally doing more clinical trials for PPMS I hope they reveal something that will be of benefit for her in the near future.


    • LondonGirl profile image

      LondonGirl 8 years ago from London

      MS is hard - you are being really brave about it!Glad to hear you have relapsing / remitting. My mother in law was diagnosed with MS in 1998, and with progressive / aggressive MS.