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QALSody/Tofersen update!! Great News from my doctors.
For those of you who have been following my story, let me provide you with an update. Yesterday I had my treatment and full neuro exam (for research).
EMG shows that some nerves are regenerating, some nerves are compensating for damaged nerves, and overall the EMG showed NO ALS progression!! There is some damage to the nerves in my legs from the myelitis. In other cases it has taken a year to recover fully so I (and doctors) are hoping that is the case with me. It really doesn’t bother me much. When I’ve done a lot then at the end of the day my legs feel like a light shock wave is running through them, or constantly vibrating. It can be annoying, but it does not interfere with my walking.
Here is the best news so far!!!! When I was at my worst around May/June 2023, my FVC was at 35. I was huffing and puffing after just a few steps. It had dropped from the 80s to 35 rapidly. I could not step onto a curb, and I was exhausted all the time. Yesterday my FVC was at 55!! 55, my mind is still blown. One of the doctors said in the beginning she didn’t think I would ever see a score of 50. Now we are both hoping that the 60’s are within range. It is still obvious to me that I have ALS, but for an unfortunate situation, I have the best case scenario possible. Of course I would prefer a cure for all of us.
At times, I feel a little awkward sharing my great results, but I hope it gives other hope! They are focusing on treatments like this for the other genetic mutations and there are huge efforts targeting sporadic ALS.
All my best,
Amanda S.
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4 Replies
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Amanda! Such great news and I’m thrilled for you! My husband, Jay, who participated in the Healey Platform trials, passed away April 2024. We both read your forum contributions. I hope and pray that this therapy continues to open new doors of healing for you–it can lay the groundwork for those who follow. Thank you for participating in a trial!
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It sounds great Amanda. I was diagnosed with ALS February 27, 2017, at the Minneapolis, Minnesota VA. I’ve had no medicine other than Riluzole that the VA has provided. I was given a supplement from a co=workers cousin that has removed the inflammation, free radicals and Oxidative stress from my body and a supplement to protect my cells back in December 2016. I’ve mentioned the supplement before but the ALS and VA to me it’s false hope. Although they came out with Radicava which gets the inflammation out of ALS patients. Oh well I’ll be alive for 8 years on February 27,2025 thanks to LifeVantage Protandium NRF1 & NRF2. It works for me. I even ride a Harley and move about just fine.
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So happy for you, Amanda! Never feel bad about your success. We are all rooting for you. Hopefully it will happen for all patients but in the meantime I celebrate your incredible journey !
Christine
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Go Amanda Go!!!!! We all love to see results which reverse this disease!!!!
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