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Update on QALSody treatments and ALS
I started QALSody July 12, 2023 and what a whirlwind my life has been! From January 2023 to May 2023 my FVC had dropped from a normal range to the 30s. In September it was a 34. I would get winded just walking to my car in the driveway; however, I was grateful to be able to walk to my car. Starting in September I started noticing small changes. I would wait before saying anything – I wanted to make sure I was not just having a good day. The trend with my SOD1 genetic mutation is a waning effect – one month my scores were low, and 6 months later they were normal. This went of for years. So, after several days, and even weeks of being able to go up a flight of stairs, not being as breathless and a few other small improvements – I emailed my doctors. At every QALSody treatment they also do a mini neuro exam. Well, a 13 months into my ALS journey and 7 months on QALSody – my FVC score has improved. It went from 34 in September 2023 to 43 in January 2024. I’m still breathless but I’m taking that as a win! All, and I mean ALL my muscle tests showed improvement. I was at 3s, -4s, and 4s — Now I am mostly 5s with a couple of 4s (hip flexors and shoulders mostly). My ALFSR scale score also improved. I am still working, walking, talking, driving and eating all independently. Yes, I can tell I have ALS, but I believe that the QALSody is having a drastic impact on my respiratory system and my strength. Just a brief update. I wanted to share the good and exciting news. I know they are working on treatments addressing other genetic mutations. The researchers believe that QALSody and what they are learning will lead down a path for treatments for all types of ALS.
Is anyone else on QALSody? What are your results? Any questions or comments?
Cheers,
Amanda
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