Skip to Accessibility Tools Skip to Content Skip to Footer

I have what?

My MS was diagnosed in 2000 but, like many people, I was misdiagnosed and treated for different illnesses for years.

In 1990 Dr.said I had a sleep disorder & treated me with sleeping pills. When that didn’t work, he did a spinal tap and an EEG. Then, he said I had epilepsy and needed to be treated with anti-seizure drugs. 1200mgs of Tegretol, and 100mgs of Phenobarbital a day!!! And I never had a seizure! I told the Dr. that I couldn’t live my life in this “Zombie-like” state so he said I could stop the Phenobarbital but, I had to continue the Tegretol for life or he would call the Dept. of Motor Vehicles and have my driver’s license suspended due to the fact that I was under his care and being treated for epilepsy. So, with this threat hanging over me, I continued the Tegretol for 10 years.

Now, due to the fact that my Dr. stopped taking my insurance later, I had to find a new neurologist. I did, and the new Dr. continued on with the Tegretol as directed from my old records.

Then, when I was driving home from work one very hot, summer day my vision started jumping around so much I had to pull over. I went immediately to my new neurologist’s office (with no appt.) and demanded to see him. After telling him my symptoms he sent me to have a brain MRI done and guess what the diagnosis was this time? Yes, MS! So, here I am today, 2013, with Progressive-Relapsing MS.

I have problems with gait, vision, migraines, numbness in my feet & hands, balance, vertigo, cognitive issues, bowel & bladder as well. The MRI’s show so many “Black Holes” my brain looks like Swiss cheese! But, I have a great neurologist now, I am still mobile, and ride a 3-wheeled bike 7 miles every day!!

I refuse to cave into this disease and look forward to each day! I believe that taking the interferon shots for 11yrs and now taking Gilenya has slowed down the progression of the MS. My MRI’s show no active lesions and that’s a good thing! I have traveled a rough road of wrong diagnosis, mind-altering medications, and debilitating symptoms due to MS, but I have the love of my husband, our kids and grandkids to keep me going and for that I am thankful.

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


  • DawnH
    6 years ago

    I was diagnosed with CIS yesterday. I start high dose steroids today at home today for 3 days. Now the question is which interferon treatment do I choose ? Any insight would be helpful. Thank you in !!!!

  • DawnH
    6 years ago

    I have decided to go with Betaseron. I have completed 3 days of IV Methylpredinslone and am now on gabepentin and Baclophen and I really do not feel very well right now. My body aches, blurry vision, hot flashes, abdominal pain not a whole lot of fun. I had my first PT appt and I think it was a little much considering everything else that I have started this week. I just want to be in my bed and rest.

    6 years ago

    Hi Dawn,

    So sorry to hear about your diagnosis. It is best to talk to your doctor about treatment options and what will work best with for you specifically. However, here is a helpful resource on learning more about CIS

    I hope this helps and please keep us posted with the treatment you end up moving forward with.

    MS Team.

  • Poll