I was just watching a news piece on Celine Dion where she announces that she can't do her 2023 tour because she's been suffering for a very long time with Stiff Person's Disease. The symptoms that she was talking about had me wondering if it had something to do with autoimmune deficiencies. And this is what I found. There's a whole article about it. I just took this snippet from it. I'll include the link.
"Who is more likely to get stiff-person syndrome?
SPS affects twice as many females as males.
It is frequently associated with other autoimmune diseases such as type-I diabetes, thyroiditis, vitiligo, and pernicious anemia.
Scientists don't yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord."
Maybe she'll talk about it and bring things out in the open. They didn't say she had pernicious anemia at all but it's one of the conditions that is linked to stiff person's disease.
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EllaNore
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That is interesting Jillymo, thanks. Interesting to read about when she talked she didn't even have the breath to get her words out. Something like that has happened to me many times. I thought it was anxiety and that my throat was closing up. But sometimes I'm so breathless that I don't even have the breath to talk. Especially when this first happened. So many strange symptoms with PA. What a crazy condition.
Thanks MoKayD I think they're talking about COVID not being related to it. The article I was sharing was meant to focus on the connection with PA and other autoimmune issues, like hypothyroidism and vitiligo. If it mentioned COVID-19 I must have missed it. But I don't believe COVID-19 cost her problems whatsoever that's for sure.
I agree. I think so many of the so-called "mystery illnessess" could be caused by vitamin B12 deficiency. I had almost every symptom of MS and would have been diagnosed with it (or some other disease) if my doctor hadn't picked up on my totally numb feet and legs and tested for it. Then, at least he knew to test further for intrinsic factor antibodies, and come up with the diagnoses of Pernicious Anaemia. Trouble was he didn't know about loading doses past the initial 2 weeks. 3 monthly, he said. Lucky I went against his advice to not look on the internet but he wouldn't listen to what I had learnt. So I changed doctors and haven't looked back, although they all think I should be on 3 monthly by now. I'm insisting on once a week right now but with opposition. Almost ready to start self injecting now. I hope someone will think to test Celine for PA if they haven't already.
Yes, I was tested for MS years ago. Of course I didn't have it. So then I was diagnosed with fibromyalgia. Hahaha, what a joke. You will never regret self-injecting. You wish you started it a long time ago. I think it's one of the greatest gifts you can give yourself. Control over your health. I say go for it and don't look back. Good luck.
Yes, I found out about that in the book that I've been reading. I know somebody here in the very small city that I live in in Australia that used to see Celine when she came over here (she has some family members over here I'm told), but apparently he hasn't seen her for a very long time. I told his sister to tell him to tell her about the PA correlation to SPS. But not just that, but that in the book, the doctor says that often all your bloods will come back as fine/normal. I reckon she'd probably get better with B12 (etc) injections. She doesn't look like a very well person - in the way that she's very thin & pale and when I look at her I get the feeling that her gut probably isn't absorbing things/nutrients well. Her previous cancer probably didn't help that any either... 😞
Yes yes yes! That's awesome that you know somebody who could try to get a message back to her. I totally agree with you loubee73. If there's some way to get the message back and you find out that they were able to tell her please let us know. You feel so helpless you just want to reach out and tell her but because she's so famous how do you do that? Oh my gosh if you could find a way to get her a message that would be amazing.
I think the potential for B12 deficiency and/Or PA to be at the route of most autoimmune disorders is extremely high.
All that can determine B12D and PA is a single point in time - when the body is deplete of B12 and cannot function correctly. To paraphrase Sally Pacholok, there's a short window of opportunity to treat B12 and if it's missed or isn't treated correctly it can result in long term problems.
Since scientists overlook this inconvenient truth and try to brush it under the rug, more and more autoimmune diseases will be treated as 'unexplained' while new synthetic drugs get produced and pushed on us since that window of opportunity has passed and there's nothing more that can be done...officially.
It would be interesting to see if a trial of B12 injections helped but I'm sure Celine Dion has some money to pay for some expert help.
I agree pickle 500! I sure wish there was some way to know if they were treating her with B12. I wish there was some way to tell somebody that could tell her. Maybe she's got a Twitter account or something that I could go to. Instagram. I'm going to go look and see if I could find Celine Dion's social media pages.
Mine too Mrs tuft. do your legs feel like the muscles are dry and stiff and like if they just had oil 😂 they would move more freely? One time I was hiking through a nature park and I found myself unable to walk anymore and there was nothing to do but lay down. There was nobody around, but I thought if somebody saw me laying on the ground they might get pretty scared so I found a bush to lay behind until I could get up again and walk further and I finally made it back to my car but that was the first time that I physically could not take another step.
That sounds awful. I’m a yogi and I notice the stiffness in my legs that wasn’t their pre b12 crash and has no reason to be there with how I exercise. It is getting better slowly.
That's interesting MrsTuft. And kind of good to know because somebody who actually works with their muscles all the time would definitely see a difference. Very interesting. I sure hope that it does keep getting better for you.
Yes! one of my first symptoms to return other than fatigue is tightness of the muscles. for me it was the pectorals laterally (both sides) and also all my muscles on the right side of my body but not as prevalent as the pecs. I have nailed this down by elimination of other causes and also the ability to recreate it by simply stopping injections.
Okay, I'm glad I posted this because even though I don't have this, my muscles are very stiff especially in my legs. See you never know when you post something how many other people actually have it. I just love this forum. I sure hope somebody finds the answers for Celine Dion. And for Bruce Willis. I really truly feel he needs B12 and a massive dose of it.It kind of goes to show you it doesn't matter how much money you have these doctors just are not doing a good job. You could be a rich movie star and they still are going to miss that you have a B12 deficiency. Something so simple to find out, yet people are still dying, and it doesn't matter how much money they have.
So glad that you can control your stiffness with your B12 injections.
Interesting find, EllaNore , and yes, seems to have v. strong links to pa, vitiligo and hypothyroid conditions.
I had a quick look at a case where the woman, a 50yr-old, had been diagnosed with all three of these a few months previously. If it's source is the spinal cord to brain, I wonder if this is a result, in some, of demyelination ? Thankfully a rare condition.
Despite being twice as likely to affect women as men, it was originally called stiff-man syndrome. But that was the late 50's. So now it is stiff-person syndrome. I can find no feasible link here to c-jab - nor did I expect to, given that the research (and inappropriate name) began in the 50's. Think in some ways we've moved on, in others, not yet.
Right, cherylclaire. Yes subacute combined degeneration came to mind with her neurological problems. The more people that get tied to pernicious anemia from other things, is just another link closer to learning more about this condition. This might be a distant link but it's still a link. And I think it's very relatable and I think that somebody like Celine Dion could just bring this all out to the surface. It would be so wonderful if B12 was her treatment because then she could speak up for our cause of needing to have B12 be legal over the counter. Every time I hear of a celebrity getting something like this, that's one of the first things I think of.
Look at Bruce Willis he's got some kind of dementia and aphasia which I also think is tied to B12. And I'm just wondering if they're missing that and he's slowly withering away and all he needs is B12. Could it be that simple could doctors be that stupid? I know I went 38 years. But I'm not rich and famous.
Of course doctors could be that daft. And yes sometimes it can be that simple. Early on researching I found two stories that broke my heart.
One was after her mother had passed away with Alzheimer's her daughter, who was a nurse, went forward with an autopsy for Alzheimer's research -which they had both agreed upon early on in the disease.
She did not have it. She had b12 deficiency. Can you imagine that shock & emotional pain?
Another was a younger woman in the dementia ward of a seniors ' home. A new head of the centre was hired & he decided to run a few more tests on her. She had/has pernicious anemia. He gave her shots and she was out and almost fully functional in no time. She walked out. She had been in there almost ten years and had lost her husband during that time.
My mother had vascular dementia where Alzheimer's was no doubt written on her chart at some point
Insert sigh. No one seemed to take in that she had dementia, signs of, for almost two decades. That is not common. People with Alzheimer's usually pass within eight to ten years maximum. Her more serious first issues were gait changes and falls. My first symptom was gait changes and then falls. I do not even go there in my head much surrounding this possibility because it enrages me. And makes me so very sad. I looked after her for over ten years plus, her last three years 24/7. Everything went one by one. In her last year she was mute & wheelchair bound with an inability to move much. It was Sally's YouTube synopsis where I *saw* my mom, saw her in that doctor who had pernicious anemia & did not even know it.
I sent it to my doctor to help her with her patients going forward (I had asked for the b12 test knowing nothing about it - I heard my aunt talking about he own b12 issues in my head, walking over to the appointment and trusted that meant something).She called it a dramatic take. And at the same time argued incessantly that my eye issues were 100% not b12 (documented symptom). So if something is a documented symptom that you have for a year and it goes POOF during loading doses and your doctor is still arguing about it - yes they can be that stupid. It takes five minutes to google the symptom list even if common sense leaves the building.
As for Celine, I believe I was like that before b12 shots. No atrophy but no ability, so strange. I could hardly make my knees stretch out beyond a crazy locked-in angle. I actually dreamt I was formed like a chair one night - with zero movement. That dream got me to push for more testing.
Wow those are very sad stories and I'm so very sorry for your mom and the B12 issue in your family. That is truly heartbreaking. I would be so angry. And you know I am angry about my own situation because 38 years, from 23 years old to 61 years old I have been trying to get doctors to listen to me. And they refuse and I've gotten worse and worse and worse until finally a doctor in my small town of 189 people finally did a B12 test. I fall all the time, my memories terrible, my gait is awkward. It was way worse than it is now. To turn left I would have to make a huge wide right turn to circle back to the left. It was very strange. And I walked sideways like those crabs do on the beach. I couldn't walk forward. I still have a slight sideways gait, especially if I'm tired. But my legs are so floppy and weak that I walk like I have MS. And I flail my arms so that I can keep my balance. I try not to but if I'm walking and I don't use my arms that way, I really can't walk well, so I look stupid. I feel very unstable on my legs. I feel like they're ready to just collapse underneath me at any time. But I keep plugging along. And I will keep pushing myself and pushing myself so that I can get my life back. I've been walking with a cane for over 23 years. I don't need it all the time but mostly it's for balance. There was a time I was crawling on my hands and knees for 3 months waiting for the B12 to start working. That's when I started self-injecting. I didn't wait. I've been waiting 38 years to be better so I said screw this and I listen to everybody here and I started self injecting right away. And I truly believe it's the only thing that's gotten me this far. I'm still anemic I still have enlarged red blood cells and too few and nobody can figure out why. My mother is 90 and she has dementia they found white spots on her brain from 21 little strokes that she had. But I made them test her B12 and sure enough her B12 is low her ferritin is low her iron is low. She's low on everything and she has hypothyroidism and always has. My sister's in charge of my mother though I don't speak to them really anymore but when I heard through the grapevine that my mom was suffering, I suggested that they test all this and sure enough she has what I have. she has what her mother died from. My grandma died of stomach cancer and pernicious anemia. My cousin has it too. But I can't get her to do anything about it. I can only lead people to water I cannot force them to drink.All I know is that this condition has completely destroyed my life and I am doing everything I can to get every little bit of it back that I can. My goal is to be able to hike again and carry my camera equipment and go out and take the pictures that I used to take. I just want to hike my mountains. I miss it so much. I've been limited for almost 3 years now, two of them not knowing what was wrong with me. I can do a lot of things so don't get me wrong. I try to be very active. I ride my riding lawn mower. I weed eat. I do all kinds of stuff but I have to do it in small stages. And then I have to take days to recover. Sunday I spent the whole day in bed. And if I was to go out hiking, I would be so scared that I would get stuck out there and not be able to get back because I wouldn't be able to walk as my legs get stiff and won't work. So I don't go too far away from home or my car.
Good luck to you. Thank you for sharing your stories. I'm so sorry about your mom. I hope your aunt takes care of herself.
I love this conversation. I trielt believe that after my experience with b12 deficiency and being bed ridden, in so much pain and having early dementia at 48. Nearly lost my career. Yet the docs told me I didn't need b12.
Once I got better from doing injections, I now trielt believe that my aunt died from B12 deficiency that got missed. It isn't just this message that convinced me but now reinforces my belief. This is a deadly problem if left undiagnosed, yet it's still so misunderstood.
Interesting. I have had two bouts of sepsis. Almost a month in hospital the second time. And although I do not know their antibiotic choices, I remember many times when they had to make a sudden about face because one was not working.
And my health never recovered the last time with sepsis. I literally just said that maybe the huge amounts of antibiotics needed might have done some damage. I was looked at like I had two heads.
Now here's my rant to the medical society. I think this is a wastebasket diagnosis. Too bad they link it to PA but then stop due to the lack of understanding about PA and b12 deficiency. after testing for PA, getting a negative then stopping; they don't recognize that a b12 deficiency could be the cause and there is a simple treatment. ugh.
then in your article Jillymo (nice one), they mention thyroid and b12 deficiency and skip over them. :shrug
just demonstrates the lack of understanding of b12 deficiency yet again. I wish we could post comments on those articles.
My surgery has stopped B12 injections.I feel dreadful,I didn't have pernicious anaemia apparently so after 13 years they pulled my injections...using spray atm.will never trust a so called GP again..
Gosh, Im so sorry. Have you thought about self injecting? How many times did they test you for intrinsic factor? Maybe you should have that test again and see where you're at. Especially since they cut off your B12 injections and your feel so bad. I don't even depend on my doctor anymore for my B12. He gave me a total of four shots and I've been self injecting ever since. I've listened to everybody here go through this trouble and I just told myself I'm not going down that road and I self-inject. However I have other issues. I'm still anemic and I've gone to I don't know how many endless appointments and they still can't find out why. You might really consider taking your injections into your own hands. Good luck
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Long term symptoms of Pernicious anemia.
