-
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.
-
11 Replies
-
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!
-
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.
-
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
-
Go Amanda Go!!!!! We all love to see results which reverse this disease!!!!
-
Well done Amanda! We all feel very happy for you and we hope soon a treatment will be able for all of us that suffer of ALS
-
This is great news. I just started Qalsody in April following diagnosis in January. Preceded by four years of slow progressing symptoms, all feet/legs so far, and 14 months of IVIG for mis-diagnosed CIDP. I will be tested next month in the clinic so I can see if there are any measurable changes. It does not seem that I have lost strength although I’ve had some muscle twitches. Still early for me to see how well I’m doing with Qalsody so I’ll post again after testing.
-
Please do keep us posted!!
-
-
Thrilled for you, Amanda! And thank you for sharing your story.🙏
-
Your information is from February. Do you have a more recent update? You used the word “recovery “. How severe was your progression? Had you lost the ability to walk and regained that ability? How long were you on qalsody treatments before you began to see significant improvement?
-
Of course I have an update 🙂
Initially I was diagnosed through the pre-fALS study I’ve been participating in since 2011. That was December 2022. At that time my EMG and physical exam was showing weakness in the legs, hip flexors and a few other areas. My forced vital capacity was still in the 80s, but I was having a difficult time breathing when I was laying down, It took a great deal of effort to stand up; however, I was able to walk just slower than my “normal.” Around March 2023 my breathing tanked. It felt like that happened overnight. Of course it wasn’t, but it was a very rapid progression. My Forced Vital Capacity Score (FVC) typically was between 80-90, a little lower than the average of 90-100. By May 2023 it had dropped to 35 and I was out of breath walking to my car. If my FVC had continued to drop at the rate it was occuring I don’t think I would have survived anothe r3 months. At that point was prescribed a NIV, which I used when I was laying down. It made all the difference in the world. At this time, I could no longer able to step up onto a curb and everything was much more difficult. I started QALSody July 12, 2023. I started seeing small changes around 3-4 months in. What I did notice almost immediately was the progression had stopped.
Now all my muscles are stronger. Not anywhere near pre-ALS, but I can pick up my 15 pound cat without being out of breath. In June my FVC was averaging at 59. That’s a 20% improvement. For the first time in 5 years I danced when I was on vacation. I had to hold hands with my partner for balance, but I could not believe I actually danced. I was exhausted after 1 song, but I’ll take it. I had stopped doing some things a few years prior to my diagnosis without realizing how challenging tasks had become.
I think my next comprehensive evaluation is around Sept 21st. I’ll have updated information at that time and I’ll share those results.
I typically update my FB after each monthly treatment. If I learn anything new at my treatment next week I’ll share that too.
I’ve also done 3 news interviews and next week the University of Miami’s PR is interviewing my about my treatment experience. They will do a written article and a informational video. When I get those links I’ll share those too.
Anytime anyone has questions I’m always willing to talk or message. I believe we are here to support one another! Any progress in ALS is progress for all of us.
Amanda
“Forced vital capacity (FVC) is <mark style=”font-family: inherit; font-size: inherit;”>the total amount of air that a person can forcibly exhale after taking the deepest possible breath</mark>. “
-
-
Amazing! Such wonderful news. Good news is SO needed! Thank you for sharing!💙🙏💙
Log in to reply.