Jennie's MS Journey

My name is Jennie and I was diagnosed with MS the summer of 2015. Starting in 2013 I began noticing some things that didn’t seem right, in 2013 for about a month I noticed some shaking of my hands, I mentioned it to my doctor. He did some bloodwork to check my thyroid and all was normal. The shaking went away so I just forgot about it. In 2014 I went back to the doctor thinking  my fatigue was out of the ordinary. Basic activities with the kids seemed to exhaust me while my friends could just keep on going. I am an outgoing person so I would fight through it but seemed strange. I went to the kids end of year field day and by the end of the day felt like I couldn’t make it home. Chalked those times up to too much heat. In 2014, I went to my primary care doctor along with urgent care twice because my lower back was hurting so much it was difficult walking longer distances. The ER doc said it was likely a sports injury from my bootcamp class. After a few months it went away. Chalked it up to the exercise class.

2015 was a crazy year and when I say crazy what I really mean is awful. We lost numerous family members including both my grandparents and in August my dad unexpectantly passed away. After a few weeks following his death I was drained both physically and emotionally. I’m not sure if this contributed to the more extreme symptoms below but I know stress can play a role in exasperating MS.

After returning home to California at the end of August from the east coast, I found myself having the hand shaking again but this time my motor skills were effected. I dropped a few things from the refrigerator and had trouble doing the girls hair in the morning and pulling up their soccer socks. Back to the doc, bloodwork was again normal. A close friend said maybe stress from my dads death but this time I was pretty sure something was wrong. I woke up a few days later with full right arm numbness. hmmmm. Maybe I slept on it funny….About 2 weeks later every time I lowered my head it felt like an electric shock running down my spine. Everytime. I tried to keep my head straight and ignore but it was a gross feeling so back to doc. I was immediately referred to a neurologist.

Went to the neurologist and ran though the weird symptoms. She did a physical exam and looked right at me and said. I’m concerned.We need to do a brain and spinal MRI ASAP. I was so used to everything looking normal after the bloodwork. I said what are you concerned it may be? She said Lyme disease, Lupus, MS. I said any chance it could be a sports injury? She repeated she was concerned but that anything is possible. She also said my optic nerves looked abnormal. I knew this was a sign of MS as MS runs in my family. I still assumed all would be ok.

A week later I did an eye test to specifically check for MS lesions in the eye. It hurt. But I was thrilled to hear all clear! I just have wonky looking optic nerves but they are super healthy. I figured at this point she was wrong about the eyes so likely the MRI’s will be good and I can just assume this was all a weird stress thing.

The following week, I got the MRI’s. I hated them and felt claustrophobic but figured I would check and move on. It was taking a long time I thought and I asked the technician how everything looked. I got a vague answer and a not so great vibe but figured I was being paranoid. Days went by and they had the results but wouldn’t tell me over the phone. Ok….now I’m thinking something is wrong. I call a close friend who works in the department and he was able to get my doc to call me.

The doctor called and said I would like you to come in with your husband, or asked me to bring someone with me. I can’t remember exactly but I knew this wasn’t good obviously. I told her I understood this means it was bad news but just tell me over the phone. So she did. She said both my brain and spinal MRI’s showed lesions consistent with MS. I asked if there was a lot. She said, there are numerous lesions, mostly in your spine.

I guess shock would be an appropriate term. I take such good care of myself and always have. I work out at least 5 days a week, Im strong, eat pretty healthy, I don’t drink alcohol. I was just in total and complete disbelief. But we immediately went into action mode. We sought the advice of numerous doctors but eventually was referred to UCSF in San Francisco. They are known for more aggressive treatment at early diagnosis.

They confirmed the diagnosis through some additional testing to rule out a few rare diseases that can mimic the look of MS. The main concern was not that I had MS (RRMS the most common type at diagnosis) but that the lesions mainly present in my spine. Spinal lesions are scary because they are more likely to cause permanent physical disability, bladder dysfunction, sexual dysfunction….so that’s about all I needed to hear. My response was do what you have to do.