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.

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