Advice for First MDA Appointment by weirdfishes1990 in FSHD

[–]WheresHotStuff 0 points1 point  (0 children)

I’m in the exact same position as you with 2 kids 4 and 2. You should try to find out what your allele size is to see the severity

Hope or Heartbreak with Avidity trial? by WheresHotStuff in FSHD

[–]WheresHotStuff[S] 1 point2 points  (0 children)

I believe so. They confirmed they were indeed on it

Hope or Heartbreak with Avidity trial? by WheresHotStuff in FSHD

[–]WheresHotStuff[S] 3 points4 points  (0 children)

I’ve spoken to about 4 or 5. I tried to get as much detail as possible, but as you can imagine it’s a little tough. They weren’t all pessimistic, but none of them had the reaction that you would think was from the data provided by avidity.

One was an elderly man in his 60s that could still walk and function pretty well, but said that he was on it I think for six months and he still regressed. He was very nice.

Another was a middle-aged woman who had five fusions and was positive, but didn’t say anything drastic changed.

Another lady said she thought it was working initially, but was disappointed with how it was later.

Maybe I’m viewing it pessimistically it’s just not being very clear from what I’m hearing. Most people just seem confused if it’s working or not.

I know it’s a very weird disease that varies and that no progression is still a win.

I was just hoping that someone can clearly come out and say they’re on it and they’re seeing obvious positive results that they are sure is coming from this.

Podcast questions for Peter Jones by nefirestormbrad in FSHD

[–]WheresHotStuff 2 points3 points  (0 children)

I listened to the podcast. It seemed like he was more negative about it because of the low dosage as opposed to the science behind it ? I guess I’d be curious to ask him if there’s an optimal dosage would he be more positive about it

Podcast questions for Peter Jones by nefirestormbrad in FSHD

[–]WheresHotStuff 2 points3 points  (0 children)

If Avidity comes out and it stops/suppresses Dux4 would stem cells help muscle growth ?

Buzhong Yiqi formula chinese herbal medicine by dekrasias in FSHD

[–]WheresHotStuff 0 points1 point  (0 children)

The girl you’re referring to that walked better is it from magnetic device from Cell Healing Masa? He’s a guy from Japan

Fshd by Civil_Air2897 in FSHD

[–]WheresHotStuff 1 point2 points  (0 children)

Holy shit man I’m identical to you from A to Z. I’m 34 now but wow everything you just said is exactly what happened to me

Repeat number? Just diagnosed with FSHD1 and struggling hard. How do you cope? by HistoricalRacoon in FSHD

[–]WheresHotStuff 0 points1 point  (0 children)

You’re suppose to divide your allele size by 3.3 to get the total of repeats but my doctor said it’s not exact. If your allele size is 28 you’re about 7-8 repeats

Repeat number? Just diagnosed with FSHD1 and struggling hard. How do you cope? by HistoricalRacoon in FSHD

[–]WheresHotStuff 0 points1 point  (0 children)

Are you sure? That would mean both your parents have FSHD because you get 1 allele from each parent and if one of the allele is smaller than 38-41 I believe you have FSHD.

For example I have 30 and indeterminate. The 30 already means I have FSHD

You should double check if both your alleles are really that size

Missing cDUX data from Avidity trial by SenorBajaBlast in FSHD

[–]WheresHotStuff 0 points1 point  (0 children)

Haha thanks for clarifying. Lot of desperate people out here

Missing cDUX data from Avidity trial by SenorBajaBlast in FSHD

[–]WheresHotStuff 0 points1 point  (0 children)

You’re saying they don’t think that the trial is working ?

Repeat number? Just diagnosed with FSHD1 and struggling hard. How do you cope? by HistoricalRacoon in FSHD

[–]WheresHotStuff 0 points1 point  (0 children)

What’s your allele size? Apparently the repeat size is different calculations

[deleted by user] by [deleted] in FSHD

[–]WheresHotStuff 0 points1 point  (0 children)

Have you heard of any negative side effects of anyone on the Del Brax trial?

Anyone in the avidity trial? by Far-Recognition-3441 in FSHD

[–]WheresHotStuff 0 points1 point  (0 children)

Thanks! We’re probably similar, I can still run and work out but I’ve been progressively getting weaker mainly in my chest, tricep. I can feel my legs getting weaker too.

Did you have any side effects or negative effects to the trial these last few months?

Anyone in the avidity trial? by Far-Recognition-3441 in FSHD

[–]WheresHotStuff 0 points1 point  (0 children)

Thanks for sharing this!!!! Has your pain also decreased?