Interviews with People Who Have MS

Merely Me Health Guide
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    I found Amy on-line through her blog, MSLOL:  Life of Learning.  I was immediately intrigued by her shoot from the hip tell it like it is writing style.  Amy has had MS for twenty years now and she has so much to offer in the telling of her experience.  Amy is both an excellent writer as well as a wonderful resource to folk who are also suffering from Multiple Sclerosis.  I hope you find her interview as inspiring as I did.  I now introduce to you...Amy!  

     

    Fellow MS Blogger:  Amy

    Type of MS: Relapsing Remitting

    Blog Site: MSLOL

     

    When were you given your official Multiple Sclerosis diagnosis?

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    June of 1988, on my 20th birthday.

     

    Did your diagnosis take a long time?

    Quite the opposite. I experienced my first symptoms on a Monday, spent a few days in the hospital being tested, and out for an MRI on Thursday, diagnosis phone call on Friday and the confirmation appointment on Monday. In less than one week I went from Zero to MS- It was quite a shock, to say the least.

     

    What tests did they do to get to the diagnosis?

    They did blood work, and the visual acuity test, and ultimately the MRI which showed lesions. My second opinion neurologist suggested it was a premature diagnosis and directed me to get a spinal tap. With no parental guidance, I decided against that and began living with this new identity. It didn't take long for the next episode to prove it to be the case.

     

    Did you know in your gut that you had MS before you got the official diagnosis? There wasn't any time for a gut reaction. I'm not sure what would have been better... the question marks and unknown or the sudden onset and diagnosis. It was very hard to swallow when the week prior I had no indications that there was anything wrong.

     

    What was your reaction to hearing that you have this disease? I was in an unusual circumstance. My parents were going through a divorce that spread them up and down the East coast. With my mom in Florida, my Dad in NJ- and me in Baltimore I had no network to help me digest this. It was already a highly emotional time for me, and trying to cope with this diagnosis was terribly frightening, especially without a family network to assure me that everything would be okay.  That said, I move forward in the best way I knew how. I was really petrified as it became clear that no one could tell me what was going to happen to me, and when I looked for more information (in the days of pre-internet) it only increased my fears.

     

    What sorts of symptoms do you or have you experienced? The diagnostic onset was numbness, tingling and slight double vision. In the past two decades I've experienced the following: some fleeting, some periodic, and some constant.

    -visual disturbances (early on and not to appear again) Double Vision and jumping - I liken to horizontal hold like the old televisions.

    -extreme fatigue

    -problems walking, dragging my leg, foot drop

    -bladder and bowel incontinence

    -small motor skills impaired

    -Lhermitte's Sign (numbness and tingling when I bend my neck down)

  • -Pain

    -Vertigo

    -balance issues

    -dizziness

     

    What meds, treatments, or alternative therapies have helped you the most?

    Having been diagnosed before there were any disease modifying drugs has had a significant impact on my experience. Those first 5 years with no options (except the symptom based treatments which seemed more like grasping at straws than anything) have made me appreciate the DMD on a different level.

     

    I started using Copaxone in the early days, before it had been approved by the FDA.

    15 years later, I feel that it has significantly improved my experience with MS. I have much less fatigue, increased stamina and far fewer attacks- Going from 2-3 episodes each year to 1 every 2-3 years.

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    Baclofen has been very helpful in managing pain. What began as an untreatable symptom, inexplicably became manageable. I've been on 75 mg daily and it has served me very well.

      

    Self-Catheterization and high doses of Ditropan XL. While I wish the Ditropan was more effective all I need is a day or two without it to realize all that it is doing. And catheterization, while challenging both emotionally and physically in the beginning has become very liberating in the long run. A classic example of "you don't know what you are capable of dealing with, until you do!"

     

    Do you have a personal philosophy that has helped you to cope with having a chronic illness?

    Like the disease itself, my philosophies are constantly evolving.  Two that are often relevant are "you don't know what you are capable of dealing with, until have to" and "that which does not kill you makes you stronger." I find that those statements empower me at weaker moments.

     

    What advice would you give to someone who has just been diagnosed with MS?

    I hesitate to give advice to a group of people who are so vastly different. Not only do each of us have our own unique version of this disease, but we each have individualized ways of coping with it. What we have to cope with, and how we cope with it is constantly evolving. I can speak to what my coping mechanisms are, with my symptoms and maybe some of those things will be significant to some people... but certainly not everyone who reads this article. This conundrum is what has inspired my life's mission. I've designed an approach that once developed will be a customizable learning space that caters to each individual's learning needs and preferences. It's called MS SoftServe. I describe it here, and the staging ground is here. Once developed, this will be an antidote for those who need to learn about their diagnosis, or disease as it grows and changes- steering clear of unwanted/anxiety inducing information.

      

    What is the worst thing about this illness? I'd like to call this question

    "What is the most challenging thing about MS?"

      

     The unpredictability

      

    Are there any silver linings to having MS?  If there aren't talk about that too.

     MS has shaped my character in many positive ways. When I look back over the past two decades at who I've become with this disease, I'm amazed at my ability to cope. It's truly empowering to look at the initial fear of "I could never deal with that" and observe it change in to "There is nothing I can't deal with." Simply put I'm a stronger person with a different perspective on life than I might have been without this diagnosis. I've met so many other people with MS who share this attitude. MS makes a unique community of people

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    Do you believe that we will see a cure for MS in our future?

    I have no doubt there will be a cure in our future. The research that is being done is tackling this disease from many angles. They will find a cure. That said, I don't spend too much time considering that. Instead I focus my energy on my own variation as I'm always re-inventing how I cope - emotionally, intellectually and physically. It's a creative process.

     

    If you could tell all the doctors and neurologists something that they would listen to, what would it be?

    If you don't work with a MS nurse, get one! This role is invaluable for an MS patient. The effort to treat not only the disease but also the individual is one of the many invaluable elements of the MS Nurse. The connection I had to my MS Nurse was life-changing. (see- Losing Someone Twice)

     

Published On: October 20, 2008