Double Whammy - Cerebral Palsy and MS

By mikki4music

2 min read

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.

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Erin Rush Community Admin
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, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
1. KaleighP Member
 I am also an NC resident. Not too far from the Virginia state line. 
2. Doreen H Community Admin
 Hi <inline-mention username="KaleighP" user-id="8796567"/>, It's great that you both can connect here. May it provide a bit of comfort knowing you are not alone. Sending my best, Doreen (Team Member)
dorry Member
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 <a href='http://3yrs.39days' target='_blank' rel='noopener noreferrer ugc'>3yrs.39days</a> 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.
rimsey123 Member
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!!!
austengirl89 Member
thank you for your story. I'm 33 and I have cerebral palsy. My case is relatively mild (spastic hemiplegia) affecting my left side. In the past ~5 years my situation has declined. I ended up quitting my job, selling my house, and moving in with my mom. I work 2 days a week at a clinic and write. I was approved for disability in the last year. It's been hard. I wrote off a lot of my symptom changes as being part of my post-covid diagnosis. Due to the onset of migraines and unexplained weakness in my left leg I had an MRI. Yesterday my doctor gave me the news that my scan was consistent with someone with CP but there were additional flairs and lesions that indicated MS. I haven't seen a neurologist yet, but it was a blow. I feel like I have lost part of my independence and I'm terrified of losing mobility. It's hard because I have so many dreams I have two degrees (BA in English and <a href='http://M.Ed' target='_blank' rel='noopener noreferrer ugc'>M.Ed</a> curriculum and instruction) and I wanted to get married and have kids. I still have my writing and I'm going to pursue it, but I feel like I'm so far outside of the "normal" that I wouldn't be perceived as marriage material. Vows say in sickness and health, but so far I haven't found anyone that thinks the sickness part should be tested right off. Maybe I'm being maudlin. I know that God is good and I'm thankful I have hobbies and family to occupy my time this just wasn't the life the starry-eyed dreamer had in mind.
1. Lori Foster Member
 You must be incredibly overwhelmed, <inline-mention username="austengirl89" user-id="6879153"/>. As scary as this all is, please don't give up on your dreams. We have many members in this community who married and had children after they were diagnosed. One of our advocates was diagnosed in her teens and now has four children, including identical triplets. It will be challenging, but it can happen. MS puts wedding vows to the test, for sure, and many people find out just how little those vows mean to their spouses after an MS diagnosis. That won't happen to you. You will know from the start that your future spouse will be at your side in sickness and in health. Your spouse will love you for who you are, not for what you are physically capable of. I know that isn't very reassuring right now. You can't trust in that until you actually do find that perfect partner. It's frustrating in that way, but we are here for you. You have a huge community here of people who get it. The writing community is pretty awesome and supportive, I hope you find a way to attend conferences in the future and connect with fellow writers. They will really buoy you through all of this. What genre do you write in? Do you belong to any writing organizations? If you do have MS, your neurologist will likely treat you first with steroids to bring this flare under control, and then with medication to slow your progression. You might find that your symptoms improve greatly, especially if you have relapsing remitting MS. MS is a strange disease. It is unpredictable and no two journeys are ever alike. I hope you don't have MS and that the MRI results are due to something even more manageable, but, like I said, we are here for you. Please keep me posted, if you don't mind. I will be thinking of you. - Lori (Team Member)
austengirl89 Member
Thank you so much! I've been pretty emotional the last few days. I've been doing a lot of research, but that can be reassuring and anxiety inducing at the same time. On a weird note I'm kind of a medical zebra I'm allergic to steroids. I have what's called a steroid flare if I take them. Basically it's the opposite of what they are supposed to do. I learned this when I had a cortisone injection post surgery and my ankle turned red, swelled, and felt like I had fire in the joint. Then I had similar reactions with topical cortisone and nasacort for my allergies. C'est la vie?! I primarily write fiction. My book is an urban fantasy based on the coast of Washington about people who are mermaids. It's not magic, rather genetic. I've written the first draft but it still needs a lot of work before it's ready for public consumption. I'm not a member of any writing groups mostly because I'm pretty introverted, but I have close friends that also write and we bounce ideas off one another.
1. Erin Rush Community Admin
 <inline-mention username="austengirl89" user-id="6879153"/>, I'm not <inline-mention username="Lori Foster" user-id="4035613"/>, but I wanted to chime in here. I have friends who have been labelled 'medical zebras' themselves, for various reasons. I know it's a moniker that no one hopes to be christened with. I do hope your medical team is able to work with you to come up with some possible treatment options. And, frankly, your book idea sounds wonderful. I have to admit, I'm a sucker for a good mermaid tale (less Disney "Little Mermaid", a little more "The Shape of Water", if that makes sense). I'm an introvert, too, but some big writers have used writer's forums online for support and critique (Diana Gabaldon, of "Outlander" fame, comes to mind). I hope you keep working on that draft and maybe send it out, eventually. Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
austengirl89 Member
Thank you! Yes it's not an "unda the sea"🎶 kind of thing. Although being a millennial I did grow up with little mermaid. My story has an element of suspense and romance. The MC also deals with trauma. It has the dynamic of a community within a community that has to stay under the radar. So they live normal lives with this extra side.... I minored in marketing in college and plan on shopping my work around to publishers. I know a lot of people go the indie route, but I don't want to because it's better to have a social following to market your book to. 
1. Lori Foster Member
 Hi <inline-mention username="austengirl89" user-id="6879153"/>. That sounds like an awesome premise for a novel. If you have a couple friends you bounce work off of, you have a writing group. It's the best kind, really. You are smart to try the traditional route first. It bumps you up a bit on that promotional/marketing ladder and also makes your book eligible for review from some of the more well-known book review outlets. I am glad you know now how you react to steroids. The standard treatment for flares is steroids, usually IV steroids. That could have been a disastrous way to find out you are allergic. The amount and variety of information about MS can be overwhelming. It is important to educate yourself, but it is equally important to step away at a certain point. Writing can be a great distraction so I am glad you have that to lean on. Best of luck with the novel! I hope to see it on the bookstore shelves someday. 😀 - Lori (Team Member)

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