The multiple sclerosis attack that pushed me over

The multiple sclerosis attack that pushed me over

I was starting to “leak through” my current multiple sclerosis therapy back in 2014. I had been on basically Betaseron most of the time until I switched to Gilyenya in 2010. I was switched for the “leaking through” thought. It was holding me on the relapsing remitting sides mostly. I’d have maybe one or two per year on all the drugs. However I would worsen without a so-called attack. My current symptoms would worsen. Back in 2014 the decision was made to switch from Gilenya to Tysabri.  At the same time started my cluster migraines where I’d suffer for 5 days straight many weeks. Also at this time I was getting second opinions on the city one of which was starting a clinical trial for a new MS drug but I needed to be off all other drugs for at least 2 months. A lot was going on at this time of the switch. I stopped taking the Gilenya maybe by the end of September   in 2014. I started Topiramate for the headaches which can have a side effect of prickliness, tingling, burning in the extremities, tiredness, fatigue, balance, dizziness etc. We decided against the clinical trial but it took longer then expected to get on the Tysabri program. By the end of October I started having symptoms that were really being chalked up to Topiramate.  When November  came we decided to try steroids when things weren’t getting better. I had 2 rounds back to back 4 days IV 1000mg per round.  It was the first time steroids did nothing. Tysabri finally started in December. The three months off of any relapse remitting MS drug caused the attack that put me where I am today.  I still “leak through” but now the worsening of symptoms are on my current state not on me from 2014 which was a lot better. My mom and I blame ourselves to a degree, we should have known better. The doctors should have known better. There were a lot of things going on at that time that things were just missed. It was that error that crested life as it is today for me.  My mom and I just talked about it yesterday. You can’t do anything about it now. Hindsight is 20/20. If we knew then what we know now there’d be 1000 things we’d change.  It’s upsetting but it was the events that happened and it’s how we got here today.  A sad but true story.

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