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Seven Year Shocker – Doctors Without a Clue

Seven years ago, my body began falling apart. My eyes felt like there was a film across them, and I truly felt that I was going blind. My body began to ache from top to bottom, and I had headaches that were tolerable one day and intolerable the next. I went to the doctor, and they conducted MRIs of my head and neck. When the results came back, the doctor diagnosed me with Demyelination. They did not treat it; they simply doubled my pain medications and ignored the fact that I needed a Neurologist.

My memory began to lapse, and I would lose two or three days in a row. I did not remember conversations or even driving from one place to the other. I received three degrees in school with honors in each one. I worked up to my Master’s degree in Education last year. This year, I started taking classes again, and I failed completely out of the program.

My medications (13 different pills 2 times a day) stopped working, and I became terrified! I changed doctors, and this one sent me straight to a Neurologist.

He prescribed 2 MRIs – one of my neck and one of my brain. The results were Demylianation caused by MS. I don’t know where to go from here! My Neurologist is treating me for memory loss with an Alzheimer’s disease medication, and we are trying to find a suitable treatment plan for my MS.

I deal with the pain, I pray that I won’t get worse, and I dread the future for not only myself but my mom who promises to take care of me when times get bad.

I need someone to understand this with me and give me coping skills to get through it. I appreciate everyone who suffers with this horrible disease, and I pray that we all survive it.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • itasara
    4 years ago

    I do feel for your situation. I hope you will start on MS medications ASAP. I get very upset when I hear stories of a doctor who for what unknown reason sees something, thinks he has the answer, and lets it go instead of seeing that red flag that it could be worth investigating. It sounds like you may have lived with this for a long time before finally getting a diagnosis?

  • Robyn O. author
    4 years ago

    The Neurologist that I am seeing now has prescribed medication for my memory but not my MS at this point. He wants my cognitive skills to be clear before we start the MS treatment. The doctor’s office that found this 7 years ago is going to hear from a lawyer very soon. I have lost a lot of life in the past 7 years, and my eyesight is fading fast. I live with paranoia now daily; thinking that something else is going to go wrong that I cannot fix. This is going to be a very bumpy ride, but I know that God is going to take care of me. He has not failed me yet!

  • north-star
    4 years ago

    I just watched Stephanie’s TED talk available on this website. I found her insightful and an exceptional example of how many of us cope during the long haul. She’s driven in a way I’m not, but we share a determination to make MS work for us. To make our lives as complete as we can. To fully participate in whatever we can do.

    I’ve had MS since 1976. I’m married and the best year of my adult life was the year I was pregnant and nursing my child. There’s nothing special about me but I’ve managed to have a full life.

    Who knows what you’ll do differently. How flexibility and work-arounds will eliminate problems you think will be with you forever.

    I get a lot of rides, though I can drive. Parking at night can be an issue. I have a parking placard and that means if you drive me somewhere we park right near the entrance. It’s a tiny perk that makes life doable with a little reward for your friends.

    We’re all here, rooting for you! Feel free to complain, explain, and/ or share any time!

  • Robyn O. author
    4 years ago

    I am the only means of transportation that my mom has, so I have to depend on my health being in decent shape to get in my truck and ride. I thought about giving up my driving days, but I am going to hold on as long as I can. I do have a placard for my truck and I am going to get a permanent tag in May.
    The issues that are going on in my life right now are hard to deal with because I face them alone. I have to make the choices that are driving me in the ground. I second guess every thing I do. Fear has never felt so real!
    I am happy that I found this site and found others like yourself who have managed to have a good life despite MS! You are an inspiration to me and my mom. It helps her to know that I am not alone and that someone understands what she cannot even imagine.
    My only real complaint is that I am stuck in this bubble. No medication is going to bring my memory back. That means that I went to school for almost 9 years and built a gigantic student loan payment for nothing. I cannot use skills that I intended to have to teach from home if I can’t remember what they are. I can’t pass the teacher’s exam. I won’t get that back.
    I am so glad that someone understands! It means everything to me!

  • kitminden
    4 years ago

    It’s going to get better – for 98% of us that is so true! Those few who struggle are lifetime smokers and still smoke or have been diagnosed with a very aggressive form of MS.

  • Robyn O. author
    4 years ago

    I smoke but very little. I was using the new vapor cigarettes to get away from the tar, but my tastebuds vanished. I had my doctor prescribe Chanix, but I got absolutely nothing out of it this go round. A lot of my other meds do not work any more, so I am not sure how to handle that yet.
    I believe you when you say that it is going to get better. I just know that I have lost 7 very valuable years of my life that will not return. That is what I have to learn to live with, and the fact that someone (a doctor) knew what could happen and ignored it makes me crazy!!

  • kitminden
    4 years ago

    Are you eating a non-inflammatory diet? Working with supplements? Friend me on facebook to join Living for a Cure, our private support group and get info on how to eat to minimize pain. You are never alone! (There are over 1700 of us there!)

  • Robyn O. author
    4 years ago

    Thank you so much! It is good to hear that someone understands! I am going nutty trying to figure things out; even on a day by day basis.

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