Road to a Diagnosis with Multiple Sclerosis

Today I would like to share the story of my road to a diagnosis with Multiple Sclerosis. In September of 2013 I had a hysterectomy. I had fibroids and had suffered with pelvic and leg pain for years. It was a very routine surgery and I felt no pain from the surgery itself. When I woke up, however, I had one of the worst migraines I had ever experienced. Headaches had become a normal part of who I was over the past several years. I had the kaleidoscope vision disturbances at times, dizzy spells, and just a general feeling of being OFF. “OFF” was the way I would try to explain the weird feelings I would have because I could not quite articulate it. This headache was different. I mentioned it to my nurses several times and was told “you probably need caffeine", and “it’s more than likely the anesthesia.” Twenty three hours later, they were wheeling me out to the curb to be put in my car to go home.

After being discharged from the hospital, I continued to get worse. Now in addition to the headache, I had double vision. I was standing and unloading the dishwasher, a feeble attempt to be normal for my twelve year old twin boys, where the story unfolds. Zack giggling said “Mama, will you show me how to do that with my eye?” "What are you talking about? “ I asked. “Well your left eye is looking at me but the right eye is staring forward" he said. With that discovery, I did just what the normal person would do; I went to my Gynecologist to find out what was wrong with my eye. September 9, 2013 our world was turned upside down. I was whisked away to an emergency appointment with an Ophthalmologist, who after running several tests, told my husband and me that he feared I either had a brain tumor or aneurysm pressing on my optic nerve. I turned completely red and I watched as the color completely left my husband’s face. Looking into the eyes of my Doctor as he held my hand, I told him I cannot leave my babies.

After a stat MRI/MRA with contrast, they discovered I had lesions on my brain. There was no tumor or aneurysm found. A lumbar puncture was done and an evoked potential test. The spinal fluid showed positive for Multiple Sclerosis. "Praise God! I have Multiple Sclerosis!" I said. Never thought I would hear that come out of my mouth!

My husband jokes that he took me to the hospital to free me of PMS and we exchanged it for MS. Humor… it does a body good! We have just started a new journey on this path with the Shepherd MS Institute and feel more hopeful than we have in the past two years. As they are working with nothing but MS, they are familiar with all of my symptoms and issues. Sometimes it is necessary to be your own advocate. Being referred to a doctor does not make for a covenant relationship; you are not bound to them. It is so important with any patient-doctor relationship to find the perfect fit.

Thankfully, I feel that I have now.

Karen

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