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Wednesday, April 14, 2021

Relapse, because a pandemic wasn’t bad enough

 Yesterday while the weather was warm and I finished up class by 10:00 AM turned out to be really a much less than ideal day by the evening, though I did get dinner which improved things ever so slightly. Why did things turn out less than ideal? A number of factors, really. Keep reading to find out. 


The biggest factor being none other than *drumroll please* RELAPSE


Yes, you read that correctly, I have now relapsed for the third time in seven years, thankfully not super severe- but in the words of ENT during and after I had the laryngoscope that I have lost count what number it is, I am right at the edge of tipping the scale and going into a full relapse- stridor and all. As of now, my voice is just scratchy/hoarse and every now and then squeaks with difficulty breathing in, no stridor thankfully. 


This however becomes a predicament- I was supposed to get my second Pfizer vaccine on the 27th (and had a dystonic reaction to my first one last Monday that resulted in the medical assist team being called and an 11 hour ED trip because I am never a boring patient in the words of GI) and ENT is worried enough about my compromised airway that if I have another reaction it could be potentially very dangerous. Now the plan is to get the entire team together, including the new movement disorder specialist who figured out the specific MD I have- myoclonus dystonia syndrome, a rare disorder with an incidence of 1 in 500,000 (in Europe) caused by genetic mutations. 

We are hoping that with treatment for the myoclonus dystonia syndrome this relapse will improve, or at the least not get worse. At the current moment the booster shot of the Pfizer vaccine is off the table and on hold, but that could potentially change depending if the vaccine clinic could have me be given the vaccine either in the vaccine clinic with neuro, ICU, and ENT staff at the ready, hospital ED, on the neurology or ENT/Airway floors, or the Medical Intensive Care Unit in order to have a quick response should they need to stabilize me.

Additionally, outside of relapse- the new neurologist would like me to be checked for mitochondrial disease, the rest of my team when I brought it up to them just kind of nodded and went “Oh, yeah. That makes a lot of sense I can see that.” Now the difficult part- contacting the mitochondrial disease clinic!


There really is never a dull moment is there? I’m very much hoping this relapse resolves itself soon and without any sort of odd complications.


Until next time,

Max

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