Céline has Stiff-Person Syndrome

[scielle]

Sorry to be spamming, but I find this interesting so hopefully others do, too. Perhaps I just need some hope that there may be options out there for Celine & others like her, however imperfect those options may be...But this all really seems to vary so much from patient to patient.

 

Here's a recent presentation (Oct'22) from Dr. Georges, who is Dr. Nash's Seattle-based partner in this HSCT for SPS study. Starts off taking about the procedure in general and then about MS, but at about 20min it shifts to talking about their SPS study (it's the one already mentioned earlier in this thread, just 9 patients). Also talks about Dr Burt's study and why it was contentious.

Remarkable improvements for some, not so much for others.

On a blog from someone who's going through the procedure now (for MS), I read he was informed there's 2% risk of mortality....

 

Dr Georges did comment on the Celine news in Dec in this story: https://www.kiro7.co...7JFVWVC2PU4GRI/

 

"Georges believes Dion’s medical team will see how she responds to immune-suppressing medications to stop her body from seizing up. He said it’s hard to imagine a performer being able to stand and sing without responding well to medical treatments, which the doctor said can include stem cell transplants.

“I think it is particularly difficult for individuals who have high performance standards to be able to continue at that high functioning level, I think that would be challenging,” Georges said. “I think it depends on the severity of the disease. Some people appear to have milder stiff person syndrome, other people have more severe stiff person syndrome. The more severe it is, the more intense the treatment needs to be.”

Georges said the ultimate therapy for stiff person syndrome is a complete reboot of the body’s entire immune response system, which is done with stem cell transplants."

Edited May 21, 2023 at 08:31 PM by scielle

[Zofia]

Thanks for some very interesting finds as usual. Even though these are speculations, they seem very probable.

 

Perhaps while in Colorado, rather than seeing Dr. Schofield, she was actually there to be treated by Dr. Nash. The Colorado stay was confirmed by Claudette (if you consider that a confirmation...) but the doctor name was purely from Closer,

 

Colorado was also confirmed by Laurence Catinot-Crost; is she even a more reliable source than Claudette? we are not sure. As for Dr. Schofield, yes, Closer is the only source of this news (but the same article suggests that Celine after a stay in Denver "dropped her bags in Mayo Clinic, Rochester"), but it seems possible and does not exclude other consultations. The same article also speaks of "tens of consultations", Claudette spoke of Céline "surrounded by specialists"... Dr. Schofield appears in the media to be very empathetic and she seems well placed to lift the spirits of someone starting the fight, but the "last chance experimental therapies" she was supposed to offer don't sound very convincing.

 

maybe she actually did get a transplant early this year. The subsequent 3-month quarantine required would explain her absence, even in any kind of videos, for LA.

 

Yes, despite the controversies around HSCT I was convinced from the start that at least Céline wanted to be able to undergo this treatment. Also for, say, psychological reasons - because of what Jean-Jacques Goldman called her “côté jusqu’au-boutiste” (her “diehard, hardliner side”). If you have to take a big risk but have the only chance to get rid of this disease in a radical way, Céline seems to me to be the type of patient who will always have the courage and the determination to do so. Besides, earlier this year her new biographer called her "terribly brave" - maybe that was just the context?

 

 

But if that's the case, I just can't imagine how they would expect her to get back on stage by August.

 

On this, I think that the most important reason for all the postponements is from the beginning the question of finances (negotiations with insurance companies, a cash turnover to compensate for losses...). I would like to believe that to this purely mercantile mechanism was added at the beginning the care to reinforce Céline's hope, to give her a prospect of remission, so that she does not sink into despair.

 

How does she feel and how are they going to get out of it now? It seems that in a short time we will enter a new reality together...

[scielle]

Yes, despite the controversies around HSCT I was convinced from the start that at least Céline wanted to be able to undergo this treatment. Also for, say, psychological reasons - because of what Jean-Jacques Goldman called her “côté jusqu’au-boutiste” (her “diehard, hardliner side”). If you have to take a big risk but have the only chance to get rid of this disease in a radical way, Céline seems to me to be the type of patient who will always have the courage and the determination to do so. Besides, earlier this year her new biographer called her "terribly brave" - maybe that was just the context?

 

True, look how many times she did IVF, said she wouldn't give up until doctors told her it was unsafe.

But this is different... there are real risks associated with HSCT. There's real risk of death not to mention other serious complications, and she'd no doubt be thinking of her kids, not just herself. Yes, broadly speaking it's a procedure that's done regularly for cancer patients and has been done for years now for MS, but there are still risks and rewards to be weighed, especially given SPS in itself is generally not life-threatening, and efficacy of the treatment for SPS is not exactly supported by a lot of research.

 

As for the new biography, I really don't know if we should expect much. What might seem new and interesting to Laurence, who admittedly is new to the world of Celine, might be just same old for us. She teased stories about Streisand and Bee Gees but like, really? We've heard those stories 20 years ago. What we want to know is the last 10 years.

[Ukrfan]

2% is quite low of a death risk. Especially if these come from infections.

[scielle]

2% is quite low of a death risk. Especially if these come from infections.

 

Well, 2 in 100 is pretty damn high when you consider she had the random chance to get a 1 in a 1,000,000 disease.

 

And when they say infections… I listened to an interview with Dr. Burt. One of the deaths was from exposure to mold. In the shower head. Of the hospital. It’s literally the smallest, most inconsequential things most of our immune systems wouldn’t even notice.

[Zofia]

True, look how many times she did IVF, said she wouldn't give up until doctors told her it was unsafe.

But this is different... there are real risks associated with HSCT. There's real risk of death not to mention other serious complications, and she'd no doubt be thinking of her kids, not just herself. Yes, broadly speaking it's a procedure that's done regularly for cancer patients and has been done for years now for MS, but there are still risks and rewards to be weighed, especially given SPS in itself is generally not life-threatening, and efficacy of the treatment for SPS is not exactly supported by a lot of research.

 

 

As for the risk of mortality - the level of acceptance of risk always varies according to the situation of each patient (especially in the case of a disease as variable as SPS). We don't know much about Céline's condition before the diagnosis, yet certain euphemisms that she herself used really upset me: "and it was really difficult for me (...) to speak everything I've been through” (especially since she uses the past tense, suggesting that now she will talk about it, but in the end she says almost nothing). If the symptoms affected "all aspects of her daily life" (to me it sounds horrible, and Céline often exaggerates but not when she talks about her health), it could make life almost unliveable. About the children - there are mothers with SPS who, due to the disease, can no longer hug their children, because in their case the touch triggers the attack… It is not known how much the symptoms of Céline were severe, but from what she herself said and passed over in silence, we can assume that it was serious. A person overwhelmed with shock and pain, facing a more than uncertain future, if only they are brave enough, will accept the risk associated with radical treatment more willingly than our calculations as healthy people would have it. Especially since - contrary to what is often repeated - the SPS itself entails a risk of early mortality (most often due to respiratory failure).

Of course again this is just speculation.

 

As for the new biography, I really don't know if we should expect much. What might seem new and interesting to Laurence, who admittedly is new to the world of Celine, might be just same old for us. She teased stories about Streisand and Bee Gees but like, really? We've heard those stories 20 years ago. What we want to know is the last 10 years.

 

Well, Mrs. Catinot-Crost does not seem to be an interlocutor at the height of Céline. She seems weird in a bad way. It's a pity that Hugues Aufray did not know someone more talented… Besides, between us, the best biographies are those that are respectful but unauthorized I'm infinitely more curious about the results of Irene Taylor Brodsky's work (if only it's still progressing). She seems someone subtle and insightful enough to understand and portray Celine, especially now.

[scielle]

I wonder what was going on last August. Recall around that time several sources claimed she's "95% recovered" and "meeting with stylists" and spotted around RW/ at dinners/ in meetings (I believe that may have been Deuxmoi and Vital Vegas?)

Perhaps whatever immune-based therapy she was on worked initially but gradually lost efficacy, or maybe this was before she got her diagnosis and realized this is not going away and whatever treatment she's on would have to last a lifetime?

[Davey84]

I wonder what was going on last August. Recall around that time several sources claimed she's "95% recovered" and "meeting with stylists" and spotted around RW/ at dinners/ in meetings (I believe that may have been Deuxmoi and Vital Vegas?)

Perhaps whatever immune-based therapy she was on worked initially but gradually lost efficacy, or maybe this was before she got her diagnosis and realized this is not going away and whatever treatment she's on would have to last a lifetime?

 

Now you mention it, that is true. It would be interesting to make a full timeline of what happened after February 2020, but also include the psychical problems she had since 2000.

 

In these times all we can do is speculate... I also wonder if years of adrenaline oppressed the hormones (or whatever) that causes the stiff person syndrome. Maybe because of COVID break, her body suddenly lost all the adrenaline and it started to shift in the wrong direction?

[Ukrfan]

 

 

Now you mention it, that is true. It would be interesting to make a full timeline of what happened after February 2020, but also include the psychical problems she had since 2000.

 

In these times all we can do is speculate... I also wonder if years of adrenaline oppressed the hormones (or whatever) that causes the stiff person syndrome. Maybe because of COVID break, her body suddenly lost all the adrenaline and it started to shift in the wrong direction?

 

My relative had a terrible reaction to covid vaccine, and she had an incurable autoimmune disease which became worse after the shot, so part of me wonders whether Celine had any side effects, and if that could be what started her decline.

 

Do we actually know when Celine got vaccinated? Was it Moderna or Pfizer?

[felicia]

I wonder what was going on last August. Recall around that time several sources claimed she's "95% recovered" and "meeting with stylists" and spotted around RW/ at dinners/ in meetings (I believe that may have been Deuxmoi and Vital Vegas?)

Perhaps whatever immune-based therapy she was on worked initially but gradually lost efficacy, or maybe this was before she got her diagnosis and realized this is not going away and whatever treatment she's on would have to last a lifetime?

 

The good news didn’t came from Vital himself he posted what he read on deuxmoi

The things he heard around vegas was always bad news

in vegas they knew for at least 2 months before cancellation that things were bad! Now he don’t get much news bc he doesn’t come to the resort Era

[Zofia]

I wonder what was going on last August. Recall around that time several sources claimed she's "95% recovered" and "meeting with stylists" and spotted around RW/ at dinners/ in meetings (I believe that may have been Deuxmoi and Vital Vegas?)

Perhaps whatever immune-based therapy she was on worked initially but gradually lost efficacy, or maybe this was before she got her diagnosis and realized this is not going away and whatever treatment she's on would have to last a lifetime?

 

 

There is another possible, very classic scenario in the long road to diagnosis in the case of the many patients with SPS. In this disease, the physical symptoms are accompanied by psychic disorders, in particular anxiety which can go as far as panic attacks and sometimes hallucinations (caused by the low level of the neurotransmitter GABA, which also causes spasms and rigidity ). A psychosomatic illness is then suspected, so anxiolytics (sedatives) are administered: benzodiazepines of the Valium group (Diazepam, Clonazepam). In an undiagnosed SPS, an improvement is then quickly obtained, which assures the medical team that it is essentially a mental illness... All this delays the precise diagnosis.

 

Was this the case with Celine? We don't know, but among all the rumors circulating from fall 2021 ("tumor, Parkinson's, Alzheimer's, fibromyalgia, small fiber neuropathy, multiple sclerosis, ALS"... I forgot something ? oh yes, "the lack of adrenochrome"), a mental disorder was the recurring theme. There were several clues, starting with her own tweet from January 26, 2022 (so at a time when she communicated little) on the importance of mental health (https://twitter.com/celinedion/status/1486368703600074752) , going through all kinds of rumors about her "mental illness" ( the apogee for me was the book by Pieau and Tropéa in which a certain Scott Roeben, this "well-informed" author of the VitalVegas, very openly suggests that the illness from which Céline suffers is above all mental. If the book is published in November 2022, the interviews will take place in the summer at the latest, and probably sooner).

 

Given all of this, I think it may have been a back and forth of improvements and relapses with an inaccurate diagnosis of some vague "psychosomatic illness", probably treated with benzodiazepines, until the fall 2022.

[GoldenLeaf]

 

 

My relative had a terrible reaction to covid vaccine, and she had an incurable autoimmune disease which became worse after the shot, so part of me wonders whether Celine had any side effects, and if that could be what started her decline.

 

Do we actually know when Celine got vaccinated? Was it Moderna or Pfizer?

I believe in April or May 2021 (I have no idea if it was Moderna, Pfizer or Johnson & Johnson) and it seems her health went spiralling down in the weeks/months after that. Vaccines in general (not just covid vaccines) trigger our immune response to recognize and fight disease-causing organisms (which is a good thing) but on the other hand they can indeed in some cases make worse autoimmune diseases.

Edited May 27, 2023 at 03:51 AM by GoldenLeaf

[newday]

The girl in the Good Morning America video says surgery on her jaw caused her to develop this. I wonder if Celine has had surgery or maybe if she pops her jaw and that caused stress on her body?

[joaofilho]

The girl in the Good Morning America video says surgery on her jaw caused her to develop this. I wonder if Celine has had surgery or maybe if she pops her jaw and that caused stress on her body?

 

May have developed because of ear surgery.

 

May have developed because of ear surgery.

[Zofia]

As far as I know, the etiology of SPS still remains unknown, nay, even the pathogenesis is known only in fragment (at least in the case of the classic phenotype, the fatal mechanism is probably triggered by pathological clones of T cells, the role of B cells is thought to be important but remains undetermined). So we can only speculate...

[blueangel92]

guys, if you type "quebeclive" on Tiktok now, you can see a crazy video about Celine on the wheelchair and unable to walk. This is unacceptable and immoral as f***. The one behind the video used the deep-fake technology to trick everyone. I have just gone through all the posts and reposts to report them. If you read my words, please go in there to report those videos! My heart is wrenched

[scielle]

Here’s Dr KcKeon, SPS specialist at the Mayo Clinic, in an interview from yesterday. Nothing really new but he sounds encouraging:

 

[KyleVan41]

It’s encouraging to hear that in his experience most patients stabilize and can get back to a quality of life and work with some restrictions. I really think while big tour days will be over for Celine she can certainly do small residency stints and one offs. And when does holy s*** will she ever be in demand ! She could charge a fortune

[incognito]

It’s encouraging to hear that in his experience most patients stabilize and can get back to a quality of life and work with some restrictions. I really think while big tour days will be over for Celine she can certainly do small residency stints and one offs. And when does holy s*** will she ever be in demand ! She could charge a fortune

 

Yeah I’d take out a second mortgage to see every show she does ever tbh

[PuraVida]

guys, if you type "quebeclive" on Tiktok now, you can see a crazy video about Celine on the wheelchair and unable to walk. This is unacceptable and immoral as f***. The one behind the video used the deep-fake technology to trick everyone. I have just gone through all the posts and reposts to report them. If you read my words, please go in there to report those videos! My heart is wrenched

 

Is it the same one with that lady in a purple dress who gets lifted out of the wheelchair?

[blueangel92]

Is it the same one with that lady in a purple dress who gets lifted out of the wheelchair?

'

 

that's it. I almost cried when I saw the video. But then my instinct kicked in right away, I went check the comment and this forum. The one that made it really needs to go screw himself

[valeriociarrocchi]

I found this magazine photo on a Facebook group. Does anyone know if it’s recent?

 

 

Sent from my iPhone using Tapatalk

[Zofia]

I found this magazine photo on a Facebook group. Does anyone know if it’s recent?

 

 

Sent from my iPhone using Tapatalk

 

 

The content is illegible, but if I'm not mistaken, it's one of those endless clones of the article from "Closer", a French tabloid (March 10) announcing the medical protocol updated by Dr. Jill R. Schofield of the Center for Multisystem Disease in Denver. This is where the term "last chance treatment" was first used - which is particularly absurd when it comes to SPS therapies. True, this disease can be called horrible, but it has a definite advantage - in its case, no method of treatment can ever be considered "last". Sometimes people achieve good symptom control after years and the search for new treatments continues (slowly but still). That's why if someone talks about "last chance treatment" in the context of SPS, it's pure clickbait.

[valeriociarrocchi]

 

 

The content is illegible, but if I'm not mistaken, it's one of those endless clones of the article from "Closer", a French tabloid (March 10) announcing the medical protocol updated by Dr. Jill R. Schofield of the Center for Multisystem Disease in Denver. This is where the term "last chance treatment" was first used - which is particularly absurd when it comes to SPS therapies. True, this disease can be called horrible, but it has a definite advantage - in its case, no method of treatment can ever be considered "last". Sometimes people achieve good symptom control after years and the search for new treatments continues (slowly but still). That's why if someone talks about "last chance treatment" in the context of SPS, it's pure clickbait.

 

Yeah, I immediately thought about Closer.

Yet, I was wondering whether the photo was recent or not. It doesn’t seem so.

 

 

Sent from my iPhone using Tapatalk

[Zofia]

Yeah, I immediately thought about Closer.

Yet, I was wondering whether the photo was recent or not. It doesn’t seem so.

 

 

Sent from my iPhone using Tapatalk

 

"The article" comes from " Spécial Dernière", the issue published on May 11 (I don't give a link so as not to give them clicks), but the pictures? I can't find anything so far...

[No1IrishFan]

The pictures were posted by the Daily Mail originally in January 2020

 

https://www.dailymail.co.uk/tvshowbiz/article-7908471/amp/Celine-Dion-steps-casual-dinner-friends-Florida-wake-mothers-death.html

[PuraVida]

'

 

that's it. I almost cried when I saw the video. But then my instinct kicked in right away, I went check the comment and this forum. The one that made it really needs to go screw himself

 

That's not AI...that's a real video of an entirely different lady. It's from a couple years ago.

[Davey84]

 

Céline is featured in the new People Magazine of June 12, 2023. Doubt there is much news in it tho.

[scielle]

 

Céline is featured in the new People Magazine of June 12, 2023. Doubt there is much news in it tho.

 

It’s probably one of the 3 People “Exclusive” stories already posted online this week.

[scielle]

Duplicate, sorry Edited June 2, 2023 at 04:06 PM by scielle