It’s my birthday tomorrow. 51!!! I’m middle age. I think my body has been middle age since I was 43. That was when multiple sclerosis hit me with the last relapse that started my path of true disability. It’s been 8 years since that last relapse. It was when I was switching from Tysabri to Rituxan. I made the mistake of stopping Tysabri because I actually had the thought of switching to an experimental drug. I needed to be off all disease modifying drugs for 3 months to be eligible to participate with the new drug. This is when my second neurological became part of my team. It was her that felt that the experimental drug wasn’t going to be the right path for me. I unfortunately had already stopped Tysabri. It then took insurance another 2 months to approve Rituxan. We had to do two appeals. My insurance denied Rituxan because it was technically not approved for multiple sclerosis. In total I was off medicine for 3 months. We’ve all questioned whether the drugs are helping or not. Im sure I am not alone when I say that I am not about to stop taking my medication to find out. I can’t answer if they still make a difference, but back in 2014 they certainly did. I would never risk being off disease modifying therapy to check again.
In a crazy twist, when I started having the last relapse, we reacted very slow with treatment. That is because at the same time I also started taking another medication for my migraines, Topiramate. Topiramate has some very crazy side effects.
- Blurred vision
- burning, prickling, or tingling sensations
- clumsiness or unsteadiness
- continuous, uncontrolled back-and-forth or rolling eye movements
- double vision
- eye redness or pain
- generalized slowing of mental and physical activity
- increased eye pressure
- memory problems
- menstrual changes or pain
- speech or language problems
- trouble in concentrating or paying attention
- unusual tiredness or weakness
When the numbness in my limbs seemed to get dramatically worse, it was very easy to think it was Topiramate. All the symptoms that I started experiencing were on the list of side effects of Topiramate. My neurologist wasn’t wrong to assume it was the new migraine medication. No one expected that I was going to have a relapse that severe. I was on medication since the beginning of my diagnosis, never missing a dose. Technically I really was only missing two Tysabri infusions. Rituxan was approved by the end of that third month. Why would we think relapse first? When we stopped Topiramate, and nothing got better, we realized. It was to late the damage was done.
That was the moment my body became middle age. Way before my head did. I never walked unaided after that relapse. It also seemed to speed up my life in secondary progressive multiple sclerosis. I’ve had MS for almost 25 years now and it was that relapse that really sped everything up. I was walking unaided up until August 2014. In the last 8 years I went from a rollator to a wheelchair. I went from being mobile to being mostly immobile. I went from independent to dependent. It was not my age that made me older, it was my disease. Sometimes MS really is a shitty and unfair disease. I’m 51 tomorrow and I can do considerably less than my 89 year old friend. So when people ask me what I’m doing to celebrate, I laugh. I’m probably watching tv and going to sleep around 9:30. That is my life these days. My age is 51 but my body is much older.