So I went out to Johns Hopkins for a follow up appointment with the Stiff Person expert and it was a great appointment. We are making a few treatment plan changes that should have a big impact.
First of all, we decided to cut out my clonazepam completely. It isn’t helping me and has never helped me at higher doses.
Second, I am being switched off of IVIG to SCIG pending insurance approval. The SCIG infusions contain immunoglobulin (IG) just like the IVIG, but the IG is released into my subcutaneous tissue slowly reducing the risk of infusion and allergic reactions. Also, after a nurse trains me, I can administer the treatment myself in the comfort of my own home! Less time in infusion centers! Woohoo! While we wait for approval, I’ll be on plasmapheresis again for five sessions, which should bring my arm function very close to baseline, which would be amazing.
Pending blood test results, I will find out if I stay on Rituxan or go on Cellcept, an oral immunosuppressant. The results aren’t back, so at this time, no one has the answers yet. However, it seems I’m experiencing a negative impact to my liver from the Rituxan, a pretty rare side effect of the drug, so we are considering that as well in the decision.
We are hopefully being connected to a doctor that is at MUSC that I can follow with after the move and will take orders from Hopkins through the doctor’s connections.
Lastly, I was enrolled in the expert’s research study to find the biomarkers for Stiff Person patients, which means, we have proven beyond a reasonable doubt, that the final diagnosis is Stiff Person Syndrome. So while I’ve been treated for it for a while now, I’ve never been able to say when I was diagnosed. Well… symptoms started early September 2012 and my “official” diagnosis day in my eyes is January 23, 2019 and that’s what I’ll tell doctors when they ask “When were you diagnosed?”. A question I never truly had an answer for and usually left me stuttering or uncharacteristically silent with no clue what to say.
Am I glad I have it? No, I’d wish it away in a heartbeat. Am I glad that I have a true medical answer and it’s not “all in my head”, stress, conversion disorder, psychosomatic illness, functional neurological disorder, etc.? Heck yes! This is THE DAY I’ve been (im)patiently waiting for for almost 7 YEARS! I feel so incredibly validated after being told so many other things over the years. The feeling of relief that we are still trying new things and striving to make my quality of life the best it possibly can be makes me as content as can be, because I know my God has got this and can accomplish many things that other humans and I cannot. And hopefully by studying me and the handful of other pediatric onset SPS patients in the world, we can find out how to better treat us. I’m not 1 in a million, I’m even rarer than that because of the pediatric onset, so people like me all need to get involved with this study to find the “key” to the differences in pathophysiology between adult onset and pediatric onset SPS. The answer is out there, we just need to ask the right questions…