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.

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

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  • rimsey123
    8 months ago

    Mikki,
    I am so sorry you were diagnosed with MS. After reading your story i can’t help but see how brave and strong you are. Helping your husband, who had the cancer & now is cancer free, that must have been a terrible time for you Mikki. Your right about one thing, God DOES have a plan for you and you are truly blessed. I thank God all throughout the day, thanking him for all the blessings he has given to me. I also have MS. I’m 65 and have had it going on 18 years. I was diagnosed when i was just turning 48 years old. I’ve had 3 relapses, was on the daily injection of Copaxone, and now on the daily pill of Aubagio. Now next month i will be taking the infusion you were on called Tysabri and i’m so scared of that drug. There is so many side effects. Mikki did you get sick from it or have any bad side effects, please let me know? I am just so scared of this drug. God bless you on your journey. Amen!!!

  • Dorry
    8 months ago

    Mikki I am sorry for the hand you have been dealt with in life. Often we are pushed to the edge. But knowing that God has your back and you have a Faith to sustain you each day helps so much.
    My husband had 2 major illnesses in life ENCEPHALITIS. & MESOTHELIOMA. Terminal, incurable, inoperable cancer he carried in his body for 40yrs. as this is the time frame it takes to develop in the lining of the lung to a full blown tumour. Thank God I was able to nurse him for 3yrs.39days and then he died. Then I got ill and now walking with 2 canes. My legs are so weak I cannot walk well and have severe fatigue in my body and a burning in my legs that feels as if my legs are on fire. I can’t get a diagnosis or good medical care here in the U.K. so I soldier on and hope that my Faith carries me through the bad days. It is sharing that helps us all find the strength to go on. I wish you well and hope that your husband remains cancer free and that God will comfort you each day and ease your pain.

  • Erin Rush moderator
    8 months ago

    Wow, Mikki! You definitely WERE dealt a double whammy! First off, I am so glad that your husband has been cancer free for three and a half years! What a great milestone!

    I hope Ocrevus is a good fit for you. Some of our members have found it to be a great treatment choice.

    I am glad you have your strength, your positive outlook and your faith to see you through the challenges of life.

    I hope your future is very bright and you and your husband both stay healthy!

    Thank very much for sharing your story with our community. We are glad to have you here.

    Best, Erin, MultipleSclerosis.net Team Member.

  • mikki4music author
    8 months ago

    Hi Erin. Thank you for your kind words. Despite being dealt this hand with CP & MS, my favorite sayings are: It’s all good, It is what it is & God has my back. My husband & best friend tell me they are going to put this on my tombstone someday. LOL. I hope that my story can help someone else.

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