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My Story

Dec 02, 2015 - 0 comments










I guess everyone has a journey to an MS diagnosis. Some are short and some are extremely long. I've never written mine down, but maybe it will help someone out there. It is pretty straight forward, which is why I feel a bit in denial -- or maybe it is a lack of acceptance. None of it seems real yet....

May 2008: I gave birth to my second, beautiful baby (a girl) in March. I was really stressed about how to manage 2 babies (my son was just 21 months when baby girl was born) and a house and a full time career. On top of that, my mom had just been laid off work; a job she really needed financially. I was incredibly stressed! 1 week before my maternity leave came to an end, I woke up with double vision. After a visit to the ophthalmologist and an MRI, which I had reviewed with a neurologist, everything went back to normal. Dx of idiopathic sixth nerve palsy.

Sept 2014: I was traveling a ton for work and under extreme pressure for about the last 18 months. I returned home after a meeting in New Jersey, got off the plane and immediately felt that my vision had changed. It was familiar, so as soon as I got home, I asked my husband to evaluate my face wondering if I'd had a stroke. All looked normal. By the time I woke up the next day, any side-to-side movement of my eyes caused blurring and double vision. I could tell my eyes were not working together. Back to the ophthalmologist - confirmed another round of 6th nerve palsy + nystagmus this time. He sent me for another MRI of my brain. All clear, so I was told to just wait. I was basically home-bound for 3 weeks, and when my double vision mostly cleared, I was left with balance issues, oscillopsia, and a ton of anxiety. By October I got an appointment at the Mayo Clinic, and they did a C-Spine & T-spine MRI plus an MRA/MRV of my brain, a million blood tests, some evoked potentials, and vestibular testing. The only abnormal results were one small, old, inactive lesion at C4-5, a slight signal in my thoracic spine, and an elevated CRP value. None of it linked to my symptoms, so I threw up my hands and declined any further testing. It took about 3 months, but everything eventually cleared up. It was just stress.

Sept 2015: Almost 1 year to the date from the last episode, I woke with 3 numb fingers on my right side and some lower leg swelling on my left. When it didn't go in about 5 days, I saw a GP -- Dx was carpal tunnel. Within a week, the numbness/hyper sensitivity/abnormal sensations were affecting the entire right side of my body from my jawline down to my toes. Back to the GP who thought the lower body was unrelated to the upper body. I broke down in tears knowing where this was going & asked her for a neurologist referral, which she gave me. Within 2 weeks I had confirmed lesions in my brain and cervical spine + 14 oligoclonal bands unique to my CSF from a lumbar puncture. I saw an MS specialist who felt we needed to rule out Sarcoid because of my still elevated CRP levels. Did that, and on November 18, she confirmed an RRMS diagnosis.

I have chosen Plegridy as my first DMD; although I still feel like I'm going to return to "normal" at some time. It has been almost 3 months now, and most of my hand functionality has returned. My legs and trunk are fine, but I still have a feeling of being swollen from my jaw to my fingers, and my fingers remain hypersensitive. Holding crumpled paper feels like squashing pins.

So that's me. I really believe that extreme stress for prolonged periods has caused this. I NEED to figure out how to manage stress better. I NEED to get back to living an active & healthy life. I guess the rest of the story remains to be seen!

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