Double Whammy - Cerebral Palsy and MS
My name is Mikki. I am a lifelong resident of North Carolina. I was born 3 months premature, weighing only 2 lbs, 13 oz. in 1966. It’s a miracle I survived. I was diagnosed with cerebral palsy (CP) at age two and I had my first surgery at age three. I’ve had 30+ surgeries in all.
In 2014, while my husband was battling colorectal cancer and going through chemo, my neurologist called me on 7/8/2014 and gave me the news that no if’s and’s or but’s I had MS. My response was “Happy Birthday to me”. Yes, I got the dreaded diagnosis of MS.
Prior to the MS diagnosis, I was struggling with fatigue like nothing I had experienced. I was unable to be out in the heat working in my flowers which I couldn’t figure out why because CP loves heat & hates winter. Eventually I couldn’t lift my left arm to fix my hair.
I called my trusted neurologist and asked if he would order a C-Spine MRI that I thought I had a disc pressing on a nerve. He called me a few days later and said, “Mikki, you have a spot on your thoracic Spine that is consistent with MS.” I said, “I can’t have MS, I have CP, and Dr. P, you do realize my husband is having surgery Monday to remove his cancerous tumor.”
Being the kind-hearted, compassionate neurologist Dr. P is, he said, you get Steve taken care of and once he’s home we will do a Brain MRI.” I had the Brain MRI. I had five to six lesions on my brain, three to four lesions on my cervical spine, and three to four on my thoracic Spine. Treatment started immediately.
I started monthly treatments of Tysabri IV infusions. I did really well until last October when my JCV numbers started increasing so to alleviate the chance of getting the rare, incurable brain disease PML I started the new MS drug Ocrevus. The infusions are every six months. I started in January and just had my second treatment July 5th.
So far, so good. Yes, I was dealt a bad hand, but God has a plan and he has my back. I’m praying a cure for this dreaded disease will be found soon. Thank the Lord, my husband has been cancer free for 3.5 years now. While I have bad days and pity parties, I am blessed.
How many specialists did you see before finding "The One"?