Being dismissed by a medical professional is GROSSLY NEGLIGENT! How could you think this is all in her head? Hearing her cry on the floor was really hard - and she said it can last for hours. My heart goes out to you and your family.
Happens to women in pain every single day, no matter the severity. Women literally having heart attacks are dismissed (and sometimes die) because the pain doesn't seem strong enough by the doctor. Women with things like endometriosis or PCOS take as much as a decade to diagnose because their pain is so often ignored as "in her head."
@@MrsBrit1 change women to humans. Humans deal with pain. All humans. This is not a woman thing. Pain is a human thing. Humans die from all kinds of things that doctors don't notice, because medical science isn't a manufacturers warranty. Medical science isn't perfect and doesn't know everything. Humans being doctors doesn't mean they are robot geniuses that can just know all things going on with a body, they are working based off of their experience and what they have learned. Then they try to research or find other doctors who might know things. HUMANS. This isnt about sex, race, gender expression, diet, socioeconomic status, or any other generic classification. HUMANS.
Yet, that is what they do time and time again. It's easier to put the blame on someone else when you have no knowledge of what is wrong, how to find out what is wrong and much less how to treat it. Just a lot easier to say you're crazy, you have mental problems, it's all in your head. That way they get off easy, instead of really putting their nose to the grindstone to help their fellow human beings
It's a shame that doctors keep prescribing antidepressants to women and tell them symptoms are all in their head, even when this woman clearly could not even get up out of her chair. Ridiculous! I was told my symptoms of POTS was just anxiety and mental illness, this has got to stop.
We as women hire our doctors. If you hire good doctors, that is not an issue. Unlike most men, some women just take who they are appointed to, not interviewing and hiring, then don't complain when not a good service provider. We have patient responsibility in hiring, just like with any other service we hire for. I've never had an issue as a woman, but I do the work and due diligence to hire a good provider, interviewing many before hiring and firing if they don't stand up to the job needed. It's a shame many women don't do that and then blame everyone else, which we see too often.
@@betsybabf748 It's a shame that certain demographics legitimately are likely to face more difficulty in having their healthcare providers actually listen to them. Yes, you can blame the patient but you're forgetting that there are people who can't "doctor" shop due to financial reasons, due to geographical isolation, etc. The reality is, more should be done to address the source of the bias rather than placing the burden entirely on the shoulders of those who are sick and ailing and looking for answers.
Doctors who refuse to believe their patients should be restricted to lab work. No patient contact. As a chronic pain patient I really feel for her. The DEA limiting how much pain medication people can have has limited me to the couch and my bed and effectively taken 1O years of my life. I’m tired of ignorance causing others pain. May their Karma find them. May that poor woman have peace and be pain free.
THANKS TO DRUG ADDICTS AND WEAK PEOPLE WHO CLAIM THEY BECAME ADDICTED BECAUSE OF DOCTORS they have destroyed people that have REAL PAIN. It's truly a doctors job to know or test and check up on these fake ones literally rule them out from others that truly need pain medication constant. Why produce medicine if your not using it? Yet they push the "JUNK" that is either causing strokes and brain damage but not the real meds? I have severe ADHD and can't get anything, yet they're pushing it out like candy to teens? Backwards system! Yes.
So fed up with doctors dismissing what they cannot understand by saying "it is all in your head." Thank you Celine for being such an open and empathic person... She has brought awareness to a condition that truly, truly needs it. ❤️
Celine advocate for Cov vaxx ... maybe she did not get enough Cov boosters that why she is so sick.... RIP .... young and healthy Victoria Lee 18 yrs old international MMA fighter """"" Sudden death""" few days ago took her shots so she could compete in Thailand mid this month
@@Bilangumus they’ve been doing this for a long time. V’s wake up dormant illnesses in individuals. Doctors call them genetics or idiopathic and that’s the end of it. Everybody gets a different surprise so it can’t be traced to the same source 👉 V…nes
It drives me nuts too. Like _of course_ it’s in their heads! There’s something going on with their neurology that’s causing these symptoms. Did you expect the problem to be somewhere in another galaxy? Now acknowledge that everything a person experiences is “just in their head” and start dealing with their real lived experience.
The world had been developing and using vaccines since 1721. It's the reason smallpox no longer kills 2-3 million people a year. Covid vaccines cut global deaths by around 63% and saved aprox 20 million lives in one year. If you factor in any side effects reported (of which a completely unrelated neurological condition is NOT one,) the benefits of administering the vaccine would still vastly outweigh the risk. Frankly, I trust scientists and those with decades of accumulated expert knowledge in their field over a bunch of Internet whackos and moral bankrupt individuals who exploit people's ignorance for their own agendas.
And this is why celebrities being open and honest about their conditions is so important. They can talk to millions and talk FOR millions. For every celebrity...there are THOUSANDS of unnamed people with that SAME condition.
As a nurse, I to have experienced being told by stupid doctors that it's just stress.Basically as a woman it's all in my head. No, it's not. I am actually feeling this going on. When a doctor doesn't listen to you, walk out and tell him you are fired! After all, you are the one that hires him.
Nothing triggers me more when I hear a doctor tell a patient it's all in their head. They said the same to my mother when she was in so much pain. They finally diagnosed her with lung cancer and she died soon after. How HORRIBLE it must have been not to be believed.
Yep a doctor told me I was faking my pain when I was in deep pain. Sometimes I think many of them just don't have empathy while working in a field that requires empathy.
hey I really hope there is like 10000% less stiff person syndrome. because I feel like I have a dozen unnecessary ocults on me (although I am mostly above everything Will plainly be awesome ↗️)
Not a whole lot has changed when it comes to helping women with health issues . Physicians often see women as histrionic & just want to throw a tranquilizer their way, rather than taking time to get to the bottom of the illness. This needs to change . I am glad this dear lady has gotten help & has hope for a better outcome & future. She is an advocate for others ! Bless her!
@@TruthProvider You’re very wrong. A lot of female doctors are judgmental and misogynistic themselves. I don’t like female doctors myself. They talk down to you and dismiss your health concerns as being hormonal/age related changes, depression or stress. You have to fight them to send you to see a specialist. “But wHy dO yOu tHinK yOu neED tO seE a sPeciAlisT?”
My mother lived with Stiff Man's Syndrome which is now called Stiff Person Syndrome. These people are telling the TRUTH!! ABSOLUTELY THE TRUTH!!!. My Mom was a very thin person and short. We lived with this condition for 45 years or longer. There were times she would pray to die because the pain was unbearable. You could visually see the muscle spasms as the turn as hard as rock in the body. She would often be dehydrated due to all of the sweating during the episodes. Cold, water, pain, or stress would bring on an attack. Often times the spasms would have her bending backwards, which we later name the "Duck Sway Back". My brother, sister, son, and nieces would have to pull her fingers apart because she would be screaming with pain. She would be exhausted afterwards and want nothing but quit. However, she didn't allow this condition to stop her as it often did; she kept on going. Always finding something to do or someone to help or somewhere to prepare a meal. When my mother was diagnosed there was only one (1) other person in the whole universe with it as well. We were given this information by her doctor at University Hospitals in Cleveland, Ohio.
I have fibromyalgia syndrome and it took me years to get anyone to listen to me. My condition is nowhere near as horrible as hers. You are in my prayers sweet lady. No one can understand how horrible it is when you are in pain and struggling and no one believes you. God bless you❤
I got it when I was diagnosed with incurable cancer I couldn't move my arms,my shoulders. I had to turn like a robot. When I put my coat on I'd get one arm in and then the last one I had to bend my arm a bit and my God the pain. It had me in tears after about 9/10 months of it. In the end I had a pain doctor from Farleighs hospice came out to my home ( this was in the pandemic 2020) And he said he thought it wasn't anything to do with my cancer he said he was was 99% sure I had fibromyalgia. I couldn't even get my arm up to brush my hair, I had to bend forward enough to brush my hair in between my legs. He prescribed me these steroids and told me they were a one off. But the first one I took, after a few hours I put my coat on to go to the shop and I didn't notice to start with that I hadn't had any pain. Then I realised I then raised my arms above my head, I couldn't believe it. They put me on something else then and I carried on taking them for a couple of years and then the pharmacy told me that the manufacturer's had stopped making them. So I had to get an alternative for them. Well by the time the doctors done a prescription for something else about a week had passed and I hadn't had anymore pain so I didn't take what the doctors had given me and I still don't take anything for it. It's probably about 3 months now that I haven't. I know not everyone is like this I hope they would be believe me. Because I know how mentally it broke me. It was worse than the cancer. Sorry for writing an essay but had to explain about it.
Thank you, it's a very cruel disease. Going on 18 years now. It's hard when people say take a bath and some ibuprofen, no we take 15 or more pills a day to walk around or others are in wheelchairs, there are many levels to this that many big universities still do not understand. Mine started at 18, others start much later. But yes I still can't get infusions, and yes they leave you screaming, it's the truth. We now finally have a foundation and all pray for a name change to this "syndrome" and also better medicines and of course one day a reason why we get this and an affordable cure for all. When Celine Dion is ever ready on her time, we pray she will help us change the name of this disease to be taken seriously and hopefully make the big time doctors understand what the truth is to this and it's not just a muscle cramp.
Hello my name is Erica, I was recently diagnosed with Stiff Person Sysmdrum and It is so challenging that getting out of bed makes me cry most days because it's painful. I have difficulty holding a pencil or pen , picking up things, and WALKING OMG I have fallen more than a few times. I have been a preschool teacher for 35 + years and at the end of January I have to retire and give up what I LOVED MOST AND THAT WAS WATCHING THE BABY grow and watching their little brain expand with knowledge. I understand your pain with the spasms and I pray they find something that can better our lives. Praying for all
I really think I have this! During a severe episode (call ambulance) does your limbs lock up and every muscle is tight. My breathing and heart rate decreases. If I over excert my muscles it's so painful. But my test ate negative. My symptoms started after having covid 19 and has gotten worse over the years. I've been diagnosed with generlized anxiety disorder and fibromyalgia. I just discovered this syndrome and presenting to my neurologist I see soon.
This is responsible journalism. This needs to be shown. Any chronic pain disease is very cruel and many suffer beyond belief just performing a simple task like sitting up. As a nurse, I’ve seen a lot of this and also how such patients are dismissed as having a psychological issue when the disease itself is worsened by the stress of not receiving the medical care they deserved and not being believed. My heart goes out to all of you who have to suffer chronic pain daily. Those of us who do not suffer, let’s hope we don’t have to in the future. ❤🙏
Exactly. Mine began with leg pair at age 10, migraine at 14. Finally, after many odd symptoms, at age 31 I was diagnosed with chronic fatigue syndrome, chronic migraine, fibromyalgia, TMJD and neuropathy. Nearly another 30 yrs later I was also diagnosed with gastroparesis. Between time I had a doctor send me for tests, then told me I didn't have neuropathy at all and refused me my pain meds and migraine meds. I recently had more tests and neuropathy has been confirmed. It's been a battle the whole while.
@@divahc1 my heart truly goes out to you really 🙏. I’ve felt pain in my life of course like toothaches, a broken bone a headache, etc. chronic pain is on a whole new level. I’m very sorry that you have gone through such a long process trying to get diagnosed, while being denied pain meds that really just take the edge off sometimes or may make the pain at least tolerable. The first time I ever met anyone with chronic pain was years before I became a nurse. I was a financial advisor and would go to the homes of clients. I met a couple in their 50s and the wife had chronic pain. Just the act of sitting in a chair was excruciating for her. She was underweight and bless her heart, she really wanted to be mannerly and sit at the table. I could see the heartbreak in her husband’s eyes. Curtains had to be closed due to severe headaches. I insisted that she make herself comfortable on the sofa where she would usually lay for any source of relief from the pain. I assured her she was not being a terrible host at all and that I would lower my voice, leave documentation so I could come back later on and make the visits short. I remember how lovingly her husband helped her to the sofa. Every step was agonizing for her. I was 30 years old at the time and never witnessed anything like that before. I actually sobbed on the car afterwards. I have empathy for my patients and I do whatever I can to ease their pain. I never tell them I know what it feels like because I don’t. I know that there are some or unfortunately many healthcare professionals who should drop their egos, stop playing the guessing game and focus on the patient as a human being. Many times we are not the experts and need to listen more to our patients. I’ve learned more from my patients than I think I ever did in nursing school. I sincerely hope that you get the care you deserve. I’m proud of Celine Dion for going public with this but especially the woman in this report. Take off the filters and lenses, take the smartphone and film what it’s really like. ❤️🙏
@@PriyaMomma that’s a great point! It would have been more informative to know when these symptoms started exactly. My comment about the responsible journalism is basically directed towards the fact that many chronic pain sufferers aren’t believed and never get a concrete diagnosis. As for getting a poke, mandatory where I work in infections. After getting infected a second time, I’ve now been suffering from “long Covid syndrome”. I’m not believed when it comes to my symptoms. I was in this frame of mind when I phrased it as “responsible journalism”. It seems to be taking a long time to come up with any concrete evidence on what exactly causes long Covid. Though I don’t have chronic pain, I suffer in many other ways.
This disease takes anything and everything. It is no respecter of persons. The problem with these rare diseases is not only that they are difficult to diagnose (so few doctors have seen them @ 1:million)but there are no “approved” treatments, just guesses from case studies because there’s no RCTs. No $$ in researching so they don’t. We get the accidental discoveries or the leftovers. Also, it doesn’t seem to get much in the way of support services like say, cancer or MS, which are more visible and common.
I have sps, 18 years now. I sing. Just had my tonsils out and pray my voice comes back better or at least normal. It's been 6 weeks, I need 6 more weeks min and see how much longer it takes. You are 💯 correct. Singing is all we have. She had a great and long career but the fact is this disease which is not reported, gives you other diseases and takes so much from you, it's a disaster of the soul for it to take your singing too.
I feel badly for the girl shown on the show, how sad there is no cure , my heart goes out to her , she’s strong and brave and a role model like Celine who I send my best wishes too. ❤️
I suffer from dysautonomia since I was very young but it took 15 years to be diagnosed. I cannot say how often doctors told me it was in my head. My luck was this particular doctor who was familiar with my syndrome and I took the related tests to be confirmed. Being diagnosed feels like the start of a long journey because it never goes away but I am grateful for Celine and this woman, who share their pain and raise awareness. It is so important for so many of us.
I know where you’re coming from.I was diagnosed with POTS in late 2005 at the Cleveland Clinic but it took over a year and 20 different doctors many of them telling me it’s all in my head before I got my diagnosis.
Thanks for the suggestion and thoughts. I have the illness since I was 12 years old and I doubt food will make it go away but I do agree that diet and food plays a big role in our health. I will check her out, nothing to loose and desperate to be better
Tis is when a celebrity truly makes a difference, shows their 'realness' it opens the eyes to millions to what really matters. This woman who shared the horrific disease she is living with, is so brave to do so.
Do not get jabbbed! And you won't get this. "CV-9 v@xcx" and ALL others?!! 💉 💉 💉 And don't worship the devil and dabble into the OCCULT / Witchcraft, like the abominable Celine Dion does! Your *only hope is in Jesus the Christ* - the Savior of the world and the God of Israel! And your only medicine is the HOLY BLOOD of Jesus‼️🚨⚠️ Call on Jesus to HEAL, save and deliver you, and to forgive all your sins, or you will never be healed but will die in your sins and go into eternal LAKE of fire and brimstone forever❗️ ⚠️📛🔥🔥🔥📛⚠️ #REPENT and #ReceiveJesus ‼️
So true. Obviously doctors can't make a diagnosis...now the general public will be aware, and can diagnosis themselves. Informing the public is such a blessing.
I’ve had seizures for 28 years and it took 28 years for me to get an official diagnosis. I’ve been on seizure meds for 28 years only to be told though that it was psycho genic meeting it’s in my head Well, I found out through reading on my own that cortisol, which is produced by stress can cause seizures. I’ve had a very stressful life. Progressively the seizures have become worse and worse and worse I’ve been unable to work for over 20 years. Now, for the first time I have medication that is controlling my seizures appropriately. And I am interviewing for jobs. In fact, I had a job interview today. Don’t know if I get it but I know that least I can do a job.
I have a neurological disease. When you start to lose control of your body, and you cannot do anything about it, it is scary. You feel like your life is over especially when you’re young. I woke up one morning with both my legs numb, and it traveled up my back, and because doctors couldn’t see it, they wouldn’t do much. 5 MRIs later, they discovered it. My heart goes out to everyone battling.
Every morning I wake up, peel open my clenched hands in some fashion and they go "pop Crack snap" then I try to straighten my legs fully, sometime I can sometimes not.. everything hurts and snaps, tendons sheaths are not large enough for tendons to pass through and so inhave trigger finger in every finger often... I hide it as best I can as I work in trades with my hands.. its getting worse, doctors in my case are absolutely useless..
I would bet money. All of these illnesses are vaccine induced. I just don’t think it’s healthy to inject these toxins into the human body. Heartbreaking.
It takes a person with a chronic illness an average of SEVEN YEARS to get an accurate diagnosis. Seven years of being poked and prodded by constant testing. Seven years of constant doctors appointments they pay for. Seven years of being referred to psychiatrists because “it’s all in your head”. Seven years of pain and illness with little to no relief. Seven years of being treated like a drug seeker because of the ER visits and the “doctor shopping,” because you can’t find a doctor to give you any answers. I’m so sorry that this woman is going through this, but I’m grateful that she finally has answers, and can get treatment and some relief. God Bless you all.
I am praying for you dearest Celine. You have given the world so much joy and lovely pleasure, Please, dont give up. You are surrounded by people worldwide who are there for you 100 per cent. Sometimes, the body our temple needs just rest. No commitments, zero stress. Walk in the forest talk to the trees smell the blossom - just chill. Dammit, if there is one woman who needs this is YOU as you have given so much of yourself to your adoring fans throughout the world. Take the utmost pleasure in the moment.
The lord didn’t pay for his monthly internet bill this month sadly the message won’t be received. I’d recommend you pray in person instead…I mean that’s how it’s always been done…no?
@@truckingwithtobee How many videos have you looked up about this before you knew she had it? Have any of us? I'll be honest and admit i haven't. The fact of the matter is that we all don't pay attention to things that we don't see day to day. But celebrities are more visible.
If you are reading this there’s a reason……No matter how good or bad you have it,wake up each day thankful for your life.Someone somewhere else is desperately fighting for theirs ❤️🇧🇸
My heart goes out to you and what you face daily. Your courage to show us what it means to have this syndrome will hopefully bring awareness and maybe it will bring funding to study this. It takes a warrior to be so vulnerable to share this. Prayers to you and your family.
Do not get jabbbed! And you won't get this. "CV-9 v@xcx" and ALL others!!! 💉 💉 💉 And don't worship the devil and dabble into the OCCULT / Witchcraft, like the abominable Celine Dion does! Your *only hope is in Jesus the Christ* - the Savior of the world and the God of Israel! And your only medicine is the HOLY BLOOD of Jesus‼️🚨⚠️ Call on Jesus to HEAL, save and deliver you, and to forgive all your sins, or you will never be healed but will die in your sins and go into eternal LAKE of fire and brimstone forever❗️ ⚠️📛🔥🔥🔥📛⚠️ #REPENT and #ReceiveJesus ‼️
@@direfranchement yes they do exist. But I would argue that it is far more common to actually have a physical reason for the symptoms than it is for it to be psychosomatic.
Psychogenic symptoms are tricky… and when you try to explain it to a patient, what they hear is often different from what is actually being said…and on many occasions patients will say, “So you’re telling me it’s all in my head?” There is an unfortunate stigma attached to the notion that our brains can cause physical symptoms. So when patients hear that, they automatically assume that the doctor is dismissing them as crazy.. Fortunately, that is not the case. Outcomes are variable and are hampered by the difficulty in communicating the diagnosis to patients. Psychogenic symptoms often mask underlying physiological disease. And the risks of both false positives and false negatives are high. Psychogenic is not a synonym for fake, they are usually not voluntary, and patients cannot just stop their symptoms. A psychogenic disorder is a real disorder - it is just that…the problem is with the brain’s software, not hardware. The brain is a powerful organ, and disorders of the brain can affect us physically. The effects of these disorders/ disease can be life-threatening and even terminal.
Thank you Beautiful Celine Dion for speaking out on this Horrific Disease. Celine Is a Voice for this Beautiful Soul and all Sufferers of this Horrific Condition. My Kindest thoughts to you and your families and Furbabies from Australia x if not for Celine Dion I would never have watched or heard of this CONDITION. 😢
My wife was plagued with this disease but back then no one knew what is was. The treatment is simple and has great results. A potassium sulphate drip was administered just like a pregnant person that needed to have their contractions slowed. A country Doctor used a common sense treatment that worked very quickly. My wife went years without another episode until mid 2015. This treatment was not known by any Doctors and the last time she went through this the ER doctor didn't want to listen. When she got so bad he finally swallowed his his arrogance and administered the same dose as was given to pregnant people who needed to slow contractions. Within minutes, as it did before, her episode had stopped. That was ten or fifteen years ago and we believe she is now cured.
I think he was trying to be respectful with so much gender bending terminology propagated lately. It's hard to know what is proper to say these days! What us wrong with saying person? Why because childbirth is a badge of courage like no other, and women suffer so much more than men? Not so.
William, Ur an angel in true life for telling us this ❤ BIG RESPECT & ADMIRATION TO U & UR WIFE 💖 I hope she's feeling much much better 🙏🤲🕊✝️😇 God bless 🙌
"your lawd"??? wtf? according to your twisted belief system "your lawd" created us and the environment we live in and now you are begging your imaginary friend to heal what "it" created? this type of religiously indoctrinated drivel is beyond disgusting!
@@mcdeigo hello...I trust you are well 🙂. First of all, I never said "lawd", I said "Lord". So clearly myself and you are not talking about the same god. I'm talking about the Lord Jesus Christ ❤️ not your "lawd". Secondly, before you talk to people, kindly ensure that you have purified your inner self, so that in that way you won't have to insult people or let alone God by using words such as "wtf". Kindly clean your tongue first 😉. Thirdly, not all sicknesses are caused by God. Satan is also behind some evil diseases. But obviously you won't mention or talk about Satan because you clearly "belong to him" isn't it. That's why you are even insulting God, because you belong to your father "Satan". And for your information God the Father of the Lord Jesus Christ, he is very much loving, graceful, he is compassionate and he does heal. It is also loving to pray for the healing of others as He commanded us to pray for their healing, knowing that in his Faithfulness he will grant them healing. Instead of being rebellious as you are now, you could have been making yourself useful, particularly your tongue to be useful instead of useless, by speaking words of hope and assurance to others. These people that are sick, for your information they are praying and hoping for healing. But if they could hear someone like you speak the way you speak, indeed that's what they would call disgusting. Change your mindset, and the words that you speak will be full of life and grace for others, and you will not find yourself speaking useless words. Blessed Sunday 😊🌹
Oh this poor woman! Bless you and I feel a lot of compassion for you. I am so sorry that you're going through this!!!! SHAME ON THE DOCTORS WHO TOLD YOU THIS WAS ALL IN YOUR HEAD. SHAME ON THEM.
This had me in tears. I live with chronic pain and I'm not taking pain pills out of fear of accidentally getting addicted. My pain is 24/7. In a small way I can sort of relate to this woman. I feel trapped in my body. I pray for healing for everyone dealing with any kind of health issues.
Cameron Fradd on TH-cam shares about her suffering. I first watched her on her husband’s channel Pints with Aquinas. I had a hard time listening to the part where she talked about her suffering. It was heartbreaking and inspirational. I have an autoimmune disease and it brought me comfort.
I'm not so much afraid of being addicted to my meds as I am of my doctors stopping them. Being at the mercy of doctors and insurance companies is scary.
@@ellakajfasz2569 You make me glad to be a Kiwi. At least we have a National Health System which is for the Public as long as you were born here & have paid your taxes all your working life. If you are disabled either physically or mentally in NZ or have a low income you will qualify to go into the public system & receive your treatment free. That's if you can find a Dr who will refer you to either the public system or a costly private specialist but you have to be rich to afford the latter.
I hope and pray they come out with a cure for this illness. ✝ I'm sick and tired when a doctor says, "It's All in Your Head! This story hits home for me personally. Thank you for sharing.
When Felines husband died, it was unimaginable for her. Wondering if her neurological net just caved from having to suffer the deaths of her, mother and brother in a short period of time. Celene Dionne's voice is so beautifuI hope a cure is found for this disease. I hope she has a good chance of making a comeback. Her voice is spectacular as that of an angel.
I really pray & wish to my god, Please help celine dion to recover her sickness soon 🙏🙏🙏🙏 & give back her strength to be normal again amin YRA 🤲🤲🤲🤲. May God bless celine dion always.......
It makes me so sad that your condition was brushed off as anxiety. I am so sorry you went through that, when you were enduring so much suffering. May Jesus bring healing to you, and all who have this condition 🙏
I've never followed Celine Dion's music, but I do know she was huge. This is so sad. It's crazy sad. Everyday, I am thankful for my blessings. I'm average - neither rich nor poor. I have my health, friends, flowers in my garden, and my kitties. I am grateful.
Welcome to being a woman!! I’m also a Naples native, but anyway, I got sick at age 17 in 2004. I was dismissed and gaslit and referred to psych for SIXTEEN years before I was diagnosed, finally, with my rare disease. And ONLY after I self diagnosed and demanded the proper evaluation. I had to FIGHT and beg, and persist. It’s brutal. My diagnosis is also 1-2 per million. Cushings Disease due to pituitary tumors. Just AWFUL. Systemically rare disease patients are vulnerable and marginalized. We often can’t even get disability approved due to lack of awareness within the SSA! Just terrible. We need HELP!
I pray that something gets done,I’m so so sorry that you have gone through all of this, ,,I have recently been told I have a pituitary tumour but it’s not a problem,! But it is because I’m not mentally the same😢 all the best my dear to you x x x
@@joannesmith5853 you are lucky! If yours isn’t a problem it’s non-functioning, meaning it’s not excessively producing any hormones. Which is great. Mine is suuuuper active. Actually there is two of them! I had surgery in August but the surgeon missed them entirely! Then I contracted MRSA during my surgery as well. Has been a nightmare. So surgery failed and I still have Cushings. My heart breaks for rare disease patients.
@@joannesmith5853 thank you for the kind words and take care of yourself! IF you ever do become symptomatic, remind your Docs of the pituitary tumor and they’ll know what to test you for. 💜💜💜
@@Nat524Ricci hi could you tell me what's your main symptoms please. I'm I Ireland and have been diagnosed with a pituitary tumor as well and my cortisol levels are above normal. I was diagnosed with cushings and colaspsed and was lucky to be found in time to save my life. I was supposed to get treated further but then they discovered I had throat cancer so that was emergency surgery and chemotherapy and radiation. My problem is I've survived the cancer after having my voice box and have my tyroid completely removed but am still waiting 2yrs later to have the pituitary tumor treated. I've put on 5 stone weight in 1 month and even though I can't really eat anymore I'm not loosing any weight. I'm thinking this is probably from the pituitary glance producing hormones. I'm also getting a lot of neck spasms but don't know if this is from the pituitary tumor or the radiation damage and surgery damage. So fed up no Dr's seem to be able to help and just keep saying well you survived the cancer . It's as if the pituitary tumor doesn't matter. Mind you our health services are very bad I Ireland now unless you have private health or its a live threatening emergency and you go into hospitals through A+E.
Thank you for being so vulnerable, ladies. I don't have Stiff Man Syndrome, but I battle more than one rare illness. 😢 My heart goes out to you both and all chronic illness sufferers/spoonies. I would speak out on some things, but I couldn't face the judgment, skepticism and cruelty of those who would focus on my not having any teeth. Medication, and illness, as well as a lot of errors made by 2 dental offices and a lab. No dental insurance for those on disability for years in my state. It's rough. I think I could cope better with the other challenges if I hadn't felt like this made me undatable and unable to do social media or many social things. I worry about my future granddaughter being ashamed of me. ETA: Still paused. I have an idea what she faced to get a diagnosis.
I am currently still battling seizures and vision problems, head pain, respiratory problems, etc. going on 7 months, doctors don’t know why but 9 out of 10 of them love to say it’s in my head. So god damn frustrating. God bless you. Glad you got an answer and are being treated and just sorry it took so long and so much pain to get there! ❤
I have complex regional pain syndrome but before I was diagnosed nearly every doctor I saw told me “it’s all in your head” every time they couldn’t figure out what it was. I started to believe it actually was in my head until a physical therapist told me what he thinks it could be. To everyone out there suffering in silence, I see you, I hear you, and most importantly I believe you. ❤
Woman are twice as likely to be misdiagnosed with psychiatric disorders before finding their actual diagnosis. Somatic disorder / functional movement disorder / conversion disorder are all coded syndromes for "its' in your head". These all come directly from Freuds original diagnosis of "Hysteria" which only woman were diagnosed with. Freud also suggested masturbation and essential oils to cure this "Hysteria" because he though the uterus was wandering somewhere in the body. Unfortunately he is the reason that a lot people still to this day believe the trope that woman are less rational / less mentally stable and more likely to be "faking" their illnesses.
Stiff Person Syndrome is a scary disease!! I just can't imagine living with such a horrible condition, with your muscles aching and being stiff all the time. Thank goodness for Céline for speaking up about this illness!!
I had a muscle spasm in my neck when I was in my early 20s that made me unable to turn my head forward. It was stuck facing to the side for a few days. It only happened that one time like 15 years ago, and I’m still super careful that I don’t overexert my neck because I’m terrified of that happening again. The pain was that bad. I would put it almost on par with childbirth. I can’t imagine living with spasms like that all the time. I honestly would probably want to die. I feel so much for this lady and Celine and all the people suffering. Hopefully this will lead to more research ❤
@@jJust_NO_ I never got a definitive answer why. I did have a significant injury about a year before that where I tripped over a stool and fell face first into the pointed side of a bathroom counter. I may or may not have been a little inebriated at the time. Lol. Anyway, I broke my cheekbone and and pulled my neck. The spasm happened about a year after I fell, and I blame it on my moms driving. I was holding on for dear life because she drives like a maniac 😂. The doctor said I probably stretched my arm too much while I was holding on and my neck muscles rebounded. I’ve had a few little ones through the years, but nothing like that because I baby my neck. I’m fairly certain I did permanent damage when I fell. Don’t drink so much that you wipe out kids. You’ll regret it when you’re older lol
@@sadiemakesmesmile that’s terrible. I’ve heard that can be extremely painful. I hope you can find a doctor that can help. I love heard it’s hard to find a good one for that too. I’m sorry ❤️
That happened to me to at around 24. Muscle spasm in my neck it was awful and scary. I still get occasional debilatating muscle spasms in my back (like maybe twice a year) but I have medication (antispasmodic) that works realky well.
Yep, was told I had depression when I told my symptoms to a doctor in Houston years ago. Given Zoloft even though I disagreed with depression diagnosis as I was in pain. After just 1 pill my heart rate went up to 160 & was visibly pounding under my pajama shirt & I felt like hot pepper sauce had been poured over my body. Called the doctor, but it was at night but I was scared. He hung up after telling me not to bother him. Took living in Singapore to get a caring & correct diagnosis of Crohn’s disease. Wasn’t depressed. Nowadays even pain isn’t real, all you have to do is eat right & stretch. Today Everything is your fault & nerves to signal real pain no longer exist. It’s a Joke. Retired RN & glad I don’t work in today’s ridiculous 🌎
Dear Cynthia R....THANK YOU for sharing your story. My animals receive better care from their Veterinarian than I do from my Family Doctor. Health Care in Canada is DISGUSTING and PATHETIC. BLESSINGS to you, Cynthia.🙏🙏
@@bnice8940 well then that’s really discouraging and leaves me with little hope, because I will say from experience healthcare in Canada is better than many parts of the U.S. But I’m sorry to hear of your experience and health struggles.
@@chrisclark692 THANK CÉLINE .. THIS WORLD FAMOUS SINGER HAD THE COURAGE TO TALK ABOUT THIS UNKNOW AND RARE DISEASE! DOCTORS AROUND THE WORLD NOW GONNA LOOK AND SEARCH FOR A CURE !
I wish I knew this woman, I was diagnosed in 2018, and my neurologist moved out of town. Not only that, but I have a myriad of other back problems, including my spine sitting on nerves. I was always the most outgoing happy person except for my anxiety, but I could work out then. My life has been in bed for 5 years without sleeping because no Dr. will help me. It's the worst, and this video doesn't even depict what I go through. God bless you, sister.
My heart goes out to you, my father had it and I am a strong advocate where I can be. Unfortunately only some of the best will usually touch it and its awful. I hope you can do and get to where you need to be to be able to go live again. From what I know it's a very up and down thing but the ups are manageable. Best of luck, I'm rooting for you
@@jeaniesmith7387 i wish i were lying. my dad probably would have lived past 45. what good would i have to lie about as an anon in youtube comments? What do you wanna hear? I have decades worth of hell watching grieving it. I speak loudly and often because I want to raise awareness which leads to funding which leads to hope that there will be answers behind this awful disease and how to treat more than some of the symptoms. So people like Lahoma, Celine and Belinda can have the future he didn't get and deserved. So people just getting those first muscle spasms don't have to wait 7 years/they're near death just to get the correct diagnosis. I hope you can find joy and stay healthy
I was devastated hearing about my Queen Celine. I have seen Celine live in concert 6 times from 1998 - 2019. Celine means the world to me. The 5th time I saw Celine I took my Mom. Less than a month later my Mom passed away very suddenly. Which happened 2 days after Celine lost Renee & her brother Michael. Seeing Celine the 6th time was a godsend. The hope of seeing Celine live in concert gives me hope & happiness during many difficult times. I lost my Dad on 8-13-22. Making seeing Celine live even more important. When I heard Celine was ill I was heartbroken. I pray she & this brave woman find peace, good health, and so much more. I need Celine to help me get through my dark times. I hope Celine isn't taken away from me too!
We all unfotunately lose our loved ones and someday they will lose us, but our only hope of ever seeing them again is in Jesus Christ and his sacrifice for us on the cross. He is alive and can never die for he is the author of life and will resurect our loved ones and possibly ourselves if we pass away before he comes. If you spend time in prayer and in bible study , you will gain that great hope of a future in eternity. No more death or sorrow, disease or suffering. Eternal youthful vigor that never tires. Getting to know those who have lived and died in ages past, to meet our first parents Adam and Eve and best of all the Father, Son, and Holy spirit. This may seem incredible , but this is the reward of those who give their heart to Jesus and live according to his ten commandment law. Dont put your trust in mankind to lift you up, put your trust in God who loves you with an everlasting love and gave his only begotten son, that whosoever believeth in him should have everlasting life. Only God gets us through our dark times as we are mortal and pass on but he is immortal and says he will never leave us or forsake us. Get to know him ,you will be happy you did.
@@katesun2957 How do you know they aren’t receiving the best treatment possible? This is a rare disease without a quick fix. Go and be mean somewhere else! Troll.
@@SJC49 I'm not a troll, I'm just smarter then you. Men get testosterone till they die. No horse urine should be able to be sold, to women as estrogen (HRT). Both women are very fine boned. Did they do a T score for them? You'd be a lousy doctor.
A research on Google tells that some treatment does help but doesn't completely diminish the pain. Imagine, sometimes I wake up in the early hours of the morning with cramps in my feet and calves. I have a good cream (Arnica) and massage my legs and feet. The pains goes away until next time (3-4 times a month). I can guess what Céline and other patients with SPS have to endure. The pain does not ever go away. And the medication actually used does cause other problems with time. It is a lose-lose situation. Praying for the woman in Naples and Céline Dion. @@SJC49
I really appreciate her showing what the spasms actually look like and how debilitating they are. Actually SEEING what happens helps a lot in understanding what it is and what it does to the body. Thank you so much to the Naples woman for sharing this.
I had a client who had this. I was a hairdresser, and I did her hair. It was so incredibly hard watching her go through this. Hope and prayers for more research for this disease. Thank you for sharing your story. The only way people are going to understand this type of suffering is through documentation, and you are incredibly brave for allowing us to see this. To the naysayers I sure hope you don't have to ever explain this kind of suffering and have doctors turn you away because it doesn't fit in their cute little file in their heads of what a typical day should look for them.
You are so typical of the everyday hairdresser: Empathic, capable, understanding. Lord bless you, and those you serve, with such an humble spirit. ❤️🙏💞
Do not get jabbbed! And you won't get this. "CV-9 v@xcx" and ALL others?!! 💉 💉 💉 And don't worship the devil and dabble into the OCCULT / Witchcraft, like the abominable Celine Dion does! Your *only hope is in Jesus the Christ* - the Savior of the world and the God of Israel! And your only medicine is the HOLY BLOOD of Jesus‼️🚨⚠️ Call on Jesus to HEAL, save and deliver you, and to forgive all your sins, or you will never be healed but will die in your sins and go into eternal LAKE of fire and brimstone forever❗️ ⚠️📛🔥🔥🔥📛⚠️ #REPENT and #ReceiveJesus ‼️
This is heartbreaking. It hurts like hell. My heart bleeds for her. God bless her with this. My thoughts and prayers are with her daily. And with her family that they never give up hope. That they believe that the medical profession will find a cure..
I have disc disease and in constant pain and the orthopedic doctor I went to said there was nothing wrong with me and it was all in my head even though I had x-rays and MRIs to prove my condition. Instead of helping me, he referred me to a psychologist since it was "all in my head" so I can completely relate to her when she said that the doctors told her the same thing. Thankfully, I found a real doctor that did back surgery on me and said I was on the verge of being paralyzed if I didn't do something. He helped my back so I wouldn't become worse and about to have a spinal cord simulator implanted to help with the pain. I'm so sorry that she has to go through this. I pray she finds complete relief.
I can feel the awful pain that this woman suffers when she goes into spasms. I get excruciating spasms , excruciating doesn’t describe the pain. I pray that with Celine Dion, and this woman talking about this condition that there is more done to come up with a cure. It is wonderful that this has been brought to our attention.
I from Naples, 5 generations as a matter of fact. Our medical facility's are what I believe the best in the country. Thank you for doing this story and keeping people informed!!! Truly a blessing!! Stiff persons syndrome needed to come to light. As did Parkinson back in the day. It took Michael J Fox to shed that light.
Это - горе и беда... Я сама так болела, что, сидя на кровати, не могла сама закинуть ноги на неё, чтобы лечь... А в туалете? Сесть- сядешь, а вот встать???????? Муж- в больнице... Лежу на одном боку и жду, чтобы помогли тихонько встать и перевернуться на бок другой... Это очень и очень тяжело. Но Бог- милостивый! Желаю Дион одного - здоровья! Ведь не зря народная мудрость гласит: " Всё можно купить, кроме здоровья!" Силен - УДАЧИ (по Черчиллю)!
Sadly, people still don't understand a person suffering from this type of condition unless they're educated about it or even experiencing the same symptoms themselves. I hope that people with this illness will be able to stay positive and try to live as comfortably as possible.
My whole heart goes out too you. I have hardly no faith in Drs. I would not want you, Celine or anyone having it!!! Thank you for sharing and Celine. God Bless you!!!!
I have interstitial cystitis and before I was diagnosed, I went to a specialist who told me after being subjected to hours of tortuous bladder tests that I just needed to stop having so much sex. I was 24 at the time and devastated because I was in a long term monogamous relationship with my husband and I said to him, I can’t even have sex it hurts too bad. He just looked at me really coldly. I will never forget him.
No, he was fine. He never pushed the issue. It was the doctor who was such a jerk and made me feel like garbage. And misdiagnosed me because I was a woman. I appreciate your understanding and kind words.
I have interstital cystitis and I know your pain. My doctor prescribed me nortriptyline 10 mg 2 pills a day. I have been taking for years and really help me a lot . I hope you are doing better now.
What an amazing, brave lady for sharing this with us. No one can possibly understand what she, and others like her must go through on a daily basis. We can see the results but still do not feel the pain they go through to totally understand. I'm sure not much research is being done because it's not profitable, and that's always the bottom line. It must be horrific when you know the spasms are coming on. As for Drs., so many of them cannot think outside the box and are not interested in doing so. Too bad they can't go through the pain involved and then say it's all in her head!!! God bless.
Aww my heart goes out to her. No one should have to suffer a debilitating disease. My prayers are for her recovery and in the meantime that her symptoms and pain would be alleviated as they find a cure.
God bless this wonderful woman, for sharing her story. This will help raise awareness for others who are suffering with this same condition. My prayers go out to her.
😢😢❤ that's so sad and so terrible for this woman and Celine Dion, my heart and prayers goes out for both of them and any other person dealing with this horrible disease😢😢❤
Shame on those doctors that dismissed her. Should be stripped of the medical license if that’s how that are going to treat patients who are clearly in physical pain.
I'm so sorry to hear of your pain and suffering. Prayers that this lady and Celine for a full recovery. I've had back spasms before and they are just so unbelievably painful that even breathing is difficult. I truly feel your pain.
This is so sad. My heart goes out to this lady but thank her for coming forward and make the public award. Oh yes, I love Celine Dion's voice as well and feel for her as well. Keep up the fight ladies.
Thanks for this reasonable journalism, atleast somebody is talking about it. My dearest Celine Dion has suffered, i miss her singing!! Quick recovery to both of us. 🙏🙏
Being dismissed by a medical professional is GROSSLY NEGLIGENT! How could you think this is all in her head? Hearing her cry on the floor was really hard - and she said it can last for hours. My heart goes out to you and your family.
Happens to women in pain every single day, no matter the severity. Women literally having heart attacks are dismissed (and sometimes die) because the pain doesn't seem strong enough by the doctor. Women with things like endometriosis or PCOS take as much as a decade to diagnose because their pain is so often ignored as "in her head."
@@MrsBrit1 change women to humans. Humans deal with pain. All humans. This is not a woman thing. Pain is a human thing. Humans die from all kinds of things that doctors don't notice, because medical science isn't a manufacturers warranty. Medical science isn't perfect and doesn't know everything. Humans being doctors doesn't mean they are robot geniuses that can just know all things going on with a body, they are working based off of their experience and what they have learned. Then they try to research or find other doctors who might know things. HUMANS. This isnt about sex, race, gender expression, diet, socioeconomic status, or any other generic classification. HUMANS.
Yet, that is what they do time and time again. It's easier to put the blame on someone else when you have no knowledge of what is wrong, how to find out what is wrong and much less how to treat it. Just a lot easier to say you're crazy, you have mental problems, it's all in your head. That way they get off easy, instead of really putting their nose to the grindstone to help their fellow human beings
Incompetence in Medical field is unacceptable. Natural medicine has solutions
@@MrsBrit1 heart attacks in women symptoms are also different to men that would make us be taken even less seriously too 😢
It's a shame that doctors keep prescribing antidepressants to women and tell them symptoms are all in their head, even when this woman clearly could not even get up out of her chair. Ridiculous! I was told my symptoms of POTS was just anxiety and mental illness, this has got to stop.
oh yeah “POTS”
(whatever the hell that is 🤔)
Men as well
We as women hire our doctors. If you hire good doctors, that is not an issue. Unlike most men, some women just take who they are appointed to, not interviewing and hiring, then don't complain when not a good service provider. We have patient responsibility in hiring, just like with any other service we hire for. I've never had an issue as a woman, but I do the work and due diligence to hire a good provider, interviewing many before hiring and firing if they don't stand up to the job needed. It's a shame many women don't do that and then blame everyone else, which we see too often.
@@betsybabf748 It's a shame that certain demographics legitimately are likely to face more difficulty in having their healthcare providers actually listen to them. Yes, you can blame the patient but you're forgetting that there are people who can't "doctor" shop due to financial reasons, due to geographical isolation, etc. The reality is, more should be done to address the source of the bias rather than placing the burden entirely on the shoulders of those who are sick and ailing and looking for answers.
@@jrviade85 so look it up
Prayers for this woman. She has a lot of courage to share her story.
So sad very
@bobbyraymond1565 From NW PA. How about you?
Heartbreaking 💔🙏🙏
Estou orando a Deus
Doctors who refuse to believe their patients should be restricted to lab work. No patient contact. As a chronic pain patient I really feel for her. The DEA limiting how much pain medication people can have has limited me to the couch and my bed and effectively taken 1O years of my life. I’m tired of ignorance causing others pain. May their Karma find them. May that poor woman have peace and be pain free.
They also refuse to diagnose Covid vaccine injuries
Amen
THANKS TO DRUG ADDICTS AND WEAK PEOPLE WHO CLAIM THEY BECAME ADDICTED BECAUSE OF DOCTORS they have destroyed people that have REAL PAIN. It's truly a doctors job to know or test and check up on these fake ones literally rule them out from others that truly need pain medication constant. Why produce medicine if your not using it? Yet they push the "JUNK" that is either causing strokes and brain damage but not the real meds? I have severe ADHD and can't get anything, yet they're pushing it out like candy to teens? Backwards system! Yes.
Exactly. Well said. I am so sorry for your pain. You are not alone. Thank you for sharing. ❤
Well said.
So fed up with doctors dismissing what they cannot understand by saying "it is all in your head." Thank you Celine for being such an open and empathic person... She has brought awareness to a condition that truly, truly needs it. ❤️
It is a vaccine injury
Celine advocate for Cov vaxx ... maybe she did not get enough Cov boosters that why she is so sick.... RIP .... young and healthy Victoria Lee 18 yrs old international MMA fighter """"" Sudden death""" few days ago took her shots so she could compete in Thailand mid this month
@@Bilangumus they’ve been doing this for a long time. V’s wake up dormant illnesses in individuals. Doctors call them genetics or idiopathic and that’s the end of it. Everybody gets a different surprise so it can’t be traced to the same source 👉 V…nes
It drives me nuts too. Like _of course_ it’s in their heads! There’s something going on with their neurology that’s causing these symptoms. Did you expect the problem to be somewhere in another galaxy? Now acknowledge that everything a person experiences is “just in their head” and start dealing with their real lived experience.
The world had been developing and using vaccines since 1721. It's the reason smallpox no longer kills 2-3 million people a year. Covid vaccines cut global deaths by around 63% and saved aprox 20 million lives in one year. If you factor in any side effects reported (of which a completely unrelated neurological condition is NOT one,) the benefits of administering the vaccine would still vastly outweigh the risk. Frankly, I trust scientists and those with decades of accumulated expert knowledge in their field over a bunch of Internet whackos and moral bankrupt individuals who exploit people's ignorance for their own agendas.
When you have your health you don't realize how fortunate you are. I hope both ladies can recover and resume their life's passion.
They wont recover and resume, there is no cure for this disease unfortunately....😢
And this is why celebrities being open and honest about their conditions is so important. They can talk to millions and talk FOR millions.
For every celebrity...there are THOUSANDS of unnamed people with that SAME condition.
As a nurse, I to have experienced being told by stupid doctors that it's just stress.Basically as a woman it's all in my head. No, it's not. I am actually feeling this going on. When a doctor doesn't listen to you, walk out and tell him you are fired! After all, you are the one that hires him.
Nothing triggers me more when I hear a doctor tell a patient it's all in their head. They said the same to my mother when she was in so much pain. They finally diagnosed her with lung cancer and she died soon after. How HORRIBLE it must have been not to be believed.
Same with my mother, but it was chronic Lyme Disease. They said her pain and brain fog were "all in your head". Really sad
Yep a doctor told me I was faking my pain when I was in deep pain. Sometimes I think many of them just don't have empathy while working in a field that requires empathy.
Also such bad doctor it's almost as if it's malpractice!!
I’ve lost all trust in modern medicine.
hey I really hope there is like 10000% less stiff person syndrome.
because I feel like I have a dozen unnecessary ocults on me (although I am mostly above everything Will plainly be awesome ↗️)
This is why I absolutely love residents and new doctors! They're excited to help, they're more willing to listen and investigate.
I am the only one in the state of Delaware who has stiff persons syndrome and I would love to be an advocate and raising funds. Who can I contact
Not a whole lot has changed when it comes to helping women with health issues . Physicians often see women as histrionic & just want to throw a tranquilizer their way, rather than taking time to get to the bottom of the illness. This needs to change . I am glad this dear lady has gotten help & has hope for a better outcome & future. She is an advocate for others ! Bless her!
That’s not true. Many physicians are women now a days. We aren’t in the 1950s anymore.
@@TruthProvider You’re very wrong. A lot of female doctors are judgmental and misogynistic themselves. I don’t like female doctors myself. They talk down to you and dismiss your health concerns as being hormonal/age related changes, depression or stress. You have to fight them to send you to see a specialist. “But wHy dO yOu tHinK yOu neED tO seE a sPeciAlisT?”
Where was that doctor when she needed to be talked out of getting the Covid jab?
@@francismarion6400 Please stop with this narrative of getting the vaccine and it causing every issue under the sun.
Before the brain MRI woman with MS were diagnosed with hysteria
My mother lived with Stiff Man's Syndrome which is now called Stiff Person Syndrome. These people are telling the TRUTH!! ABSOLUTELY THE TRUTH!!!. My Mom was a very thin person and short. We lived with this condition for 45 years or longer. There were times she would pray to die because the pain was unbearable. You could visually see the muscle spasms as the turn as hard as rock in the body. She would often be dehydrated due to all of the sweating during the episodes. Cold, water, pain, or stress would bring on an attack. Often times the spasms would have her bending backwards, which we later name the "Duck Sway Back". My brother, sister, son, and nieces would have to pull her fingers apart because she would be screaming with pain. She would be exhausted afterwards and want nothing but quit. However, she didn't allow this condition to stop her as it often did; she kept on going. Always finding something to do or someone to help or somewhere to prepare a meal. When my mother was diagnosed there was only one (1) other person in the whole universe with it as well. We were given this information by her doctor at University Hospitals in Cleveland, Ohio.
I have fibromyalgia syndrome and it took me years to get anyone to listen to me. My condition is nowhere near as horrible as hers. You are in my prayers sweet lady. No one can understand how horrible it is when you are in pain and struggling and no one believes you. God bless you❤
Fibromyalgia is hard too. Hope you are keeping well
I got it when I was diagnosed with incurable cancer I couldn't move my arms,my shoulders. I had to turn like a robot. When I put my coat on I'd get one arm in and then the last one I had to bend my arm a bit and my God the pain. It had me in tears after about 9/10 months of it. In the end I had a pain doctor from Farleighs hospice came out to my home ( this was in the pandemic 2020) And he said he thought it wasn't anything to do with my cancer he said he was was 99% sure I had fibromyalgia. I couldn't even get my arm up to brush my hair, I had to bend forward enough to brush my hair in between my legs. He prescribed me these steroids and told me they were a one off. But the first one I took, after a few hours I put my coat on to go to the shop and I didn't notice to start with that I hadn't had any pain. Then I realised I then raised my arms above my head, I couldn't believe it. They put me on something else then and I carried on taking them for a couple of years and then the pharmacy told me that the manufacturer's had stopped making them. So I had to get an alternative for them. Well by the time the doctors done a prescription for something else about a week had passed and I hadn't had anymore pain so I didn't take what the doctors had given me and I still don't take anything for it. It's probably about 3 months now that I haven't. I know not everyone is like this I hope they would be believe me. Because I know how mentally it broke me. It was worse than the cancer. Sorry for writing an essay but had to explain about it.
@@janvdb9258 tyvm I am. Hugs
I hear u .
Aw tysm 😄
My heart goes out to anyone going through this. Much healing prayers
Same i feel for them all
This does need healing prayer this need to cast out that is demonic spirit
@@leoniehendrickson2530 🤦♂
Thank you, it's a very cruel disease. Going on 18 years now. It's hard when people say take a bath and some ibuprofen, no we take 15 or more pills a day to walk around or others are in wheelchairs, there are many levels to this that many big universities still do not understand. Mine started at 18, others start much later. But yes I still can't get infusions, and yes they leave you screaming, it's the truth. We now finally have a foundation and all pray for a name change to this "syndrome" and also better medicines and of course one day a reason why we get this and an affordable cure for all. When Celine Dion is ever ready on her time, we pray she will help us change the name of this disease to be taken seriously and hopefully make the big time doctors understand what the truth is to this and it's not just a muscle cramp.
healing "prayers"? wtf!
Hello my name is Erica, I was recently diagnosed with Stiff Person Sysmdrum and It is so challenging that getting out of bed makes me cry most days because it's painful. I have difficulty holding a pencil or pen , picking up things, and WALKING OMG I have fallen more than a few times. I have been a preschool teacher for 35 + years and at the end of January I have to retire and give up what I LOVED MOST AND THAT WAS WATCHING THE BABY grow and watching their little brain expand with knowledge. I understand your pain with the spasms and I pray they find something that can better our lives. Praying for all
Bless you in your suffering. Thank you for teaching the kids for those decades when you could.
I really think I have this! During a severe episode (call ambulance) does your limbs lock up and every muscle is tight. My breathing and heart rate decreases. If I over excert my muscles it's so painful. But my test ate negative. My symptoms started after having covid 19 and has gotten worse over the years. I've been diagnosed with generlized anxiety disorder and fibromyalgia. I just discovered this syndrome and presenting to my neurologist I see soon.
I hope and pray that they are researching treatments for this disease! Wishing you less pain and peace. From a fellow Teacher…
God bless you.
God bless you Erica. I pray that you will get better and that a cure can be found xxxxx
I pray for all those people in pain! 🙏🏽
This is responsible journalism. This needs to be shown. Any chronic pain disease is very cruel and many suffer beyond belief just performing a simple task like sitting up. As a nurse, I’ve seen a lot of this and also how such patients are dismissed as having a psychological issue when the disease itself is worsened by the stress of not receiving the medical care they deserved and not being believed. My heart goes out to all of you who have to suffer chronic pain daily. Those of us who do not suffer, let’s hope we don’t have to in the future. ❤🙏
Exactly. Mine began with leg pair at age 10, migraine at 14. Finally, after many odd symptoms, at age 31 I was diagnosed with chronic fatigue syndrome, chronic migraine, fibromyalgia, TMJD and neuropathy. Nearly another 30 yrs later I was also diagnosed with gastroparesis. Between time I had a doctor send me for tests, then told me I didn't have neuropathy at all and refused me my pain meds and migraine meds. I recently had more tests and neuropathy has been confirmed. It's been a battle the whole while.
@@divahc1 my heart truly goes out to you really 🙏. I’ve felt pain in my life of course like toothaches, a broken bone a headache, etc. chronic pain is on a whole new level. I’m very sorry that you have gone through such a long process trying to get diagnosed, while being denied pain meds that really just take the edge off sometimes or may make the pain at least tolerable. The first time I ever met anyone with chronic pain was years before I became a nurse. I was a financial advisor and would go to the homes of clients. I met a couple in their 50s and the wife had chronic pain. Just the act of sitting in a chair was excruciating for her. She was underweight and bless her heart, she really wanted to be mannerly and sit at the table. I could see the heartbreak in her husband’s eyes. Curtains had to be closed due to severe headaches. I insisted that she make herself comfortable on the sofa where she would usually lay for any source of relief from the pain. I assured her she was not being a terrible host at all and that I would lower my voice, leave documentation so I could come back later on and make the visits short. I remember how lovingly her husband helped her to the sofa. Every step was agonizing for her. I was 30 years old at the time and never witnessed anything like that before. I actually sobbed on the car afterwards. I have empathy for my patients and I do whatever I can to ease their pain. I never tell them I know what it feels like because I don’t. I know that there are some or unfortunately many healthcare professionals who should drop their egos, stop playing the guessing game and focus on the patient as a human being. Many times we are not the experts and need to listen more to our patients. I’ve learned more from my patients than I think I ever did in nursing school. I sincerely hope that you get the care you deserve. I’m proud of Celine Dion for going public with this but especially the woman in this report. Take off the filters and lenses, take the smartphone and film what it’s really like. ❤️🙏
Responsible journalism? They didn’t even say what year her symptoms started. I bet it was mid 2020 after she got a poke. It’s crappy journalism!!
@@PriyaMomma that’s a great point! It would have been more informative to know when these symptoms started exactly. My comment about the responsible journalism is basically directed towards the fact that many chronic pain sufferers aren’t believed and never get a concrete diagnosis. As for getting a poke, mandatory where I work in infections. After getting infected a second time, I’ve now been suffering from “long Covid syndrome”. I’m not believed when it comes to my symptoms. I was in this frame of mind when I phrased it as “responsible journalism”. It seems to be taking a long time to come up with any concrete evidence on what exactly causes long Covid. Though I don’t have chronic pain, I suffer in many other ways.
Well said. It hurts me to see people hurting. May our Lord heal these hurting individuals. 😥
My heart breaks for Celine and all that suffer from this horrible disorder.. To take her voice is to take her happiness.
Agree
This disease takes anything and everything. It is no respecter of persons. The problem with these rare diseases is not only that they are difficult to diagnose (so few doctors have seen them @ 1:million)but there are no “approved” treatments, just guesses from case studies because there’s no RCTs. No $$ in researching so they don’t. We get the accidental discoveries or the leftovers.
Also, it doesn’t seem to get much in the way of support services like say, cancer or MS, which are more visible and common.
I have sps, 18 years now. I sing. Just had my tonsils out and pray my voice comes back better or at least normal. It's been 6 weeks, I need 6 more weeks min and see how much longer it takes. You are 💯 correct. Singing is all we have. She had a great and long career but the fact is this disease which is not reported, gives you other diseases and takes so much from you, it's a disaster of the soul for it to take your singing too.
I feel badly for the girl shown on the show, how sad there is no cure , my heart goes out to her , she’s strong and brave and a role model like Celine who I send my best wishes too. ❤️
I suffer from dysautonomia since I was very young but it took 15 years to be diagnosed. I cannot say how often doctors told me it was in my head. My luck was this particular doctor who was familiar with my syndrome and I took the related tests to be confirmed. Being diagnosed feels like the start of a long journey because it never goes away but I am grateful for Celine and this woman, who share their pain and raise awareness. It is so important for so many of us.
I know where you’re coming from.I was diagnosed with POTS in late 2005 at the Cleveland Clinic but it took over a year and 20 different doctors many of them telling me it’s all in my head before I got my diagnosis.
Look into nutritionist Mary Ruddick. She recovered from same illness as yours.
Thanks for the suggestion and thoughts. I have the illness since I was 12 years old and I doubt food will make it go away but I do agree that diet and food plays a big role in our health. I will check her out, nothing to loose and desperate to be better
Wow! This woman is a hero to me! So positive in the face of such adversity.
Tis is when a celebrity truly makes a difference, shows their 'realness' it opens the eyes to millions to what really matters. This woman who shared the horrific disease she is living with, is so brave to do so.
Do not get jabbbed! And you won't get this.
"CV-9 v@xcx" and ALL others?!! 💉 💉 💉
And don't worship the devil and dabble into the OCCULT / Witchcraft, like the abominable Celine Dion does!
Your *only hope is in Jesus the Christ* - the Savior of the world and the God of Israel!
And your only medicine is the HOLY BLOOD of Jesus‼️🚨⚠️
Call on Jesus to HEAL, save and deliver you, and to forgive all your sins, or you will never be healed but will die in your sins and go into eternal LAKE of fire and brimstone forever❗️
⚠️📛🔥🔥🔥📛⚠️
#REPENT and #ReceiveJesus ‼️
Perfect example is Christopher Reeves
So true. Obviously doctors can't make a diagnosis...now the general public will be aware, and can diagnosis themselves. Informing the public is such a blessing.
@@stephaniejackson9558 yes!
I'm so glad she now knows what is wrong. My heart bleeds for this poor woman. May God bless you.
gods doing nothing can't u see
@@rg-dz4rm you can’t see
@@rg-dz4rm we are all tested by God in many different ways and illness is one of them.
@@-Zagroswere the Covid shots another test because I know many religious people who ended up getting them still lol
@@-Zagros Encounter Ministries TH-cam channel. (Mark Hemans)#
😢😢😢 omg I feel so bad for people with this condition. I felt that pain emotionally
I’ve had seizures for 28 years and it took 28 years for me to get an official diagnosis. I’ve been on seizure meds for 28 years only to be told though that it was psycho genic meeting it’s in my head Well, I found out through reading on my own that cortisol, which is produced by stress can cause seizures. I’ve had a very stressful life. Progressively the seizures have become worse and worse and worse I’ve been unable to work for over 20 years. Now, for the first time I have medication that is controlling my seizures appropriately. And I am interviewing for jobs. In fact, I had a job interview today. Don’t know if I get it but I know that least I can do a job.
I have a neurological disease. When you start to lose control of your body, and you cannot do anything about it, it is scary. You feel like your life is over especially when you’re young. I woke up one morning with both my legs numb, and it traveled up my back, and because doctors couldn’t see it, they wouldn’t do much. 5 MRIs later, they discovered it. My heart goes out to everyone battling.
Every morning I wake up, peel open my clenched hands in some fashion and they go "pop Crack snap" then I try to straighten my legs fully, sometime I can sometimes not.. everything hurts and snaps, tendons sheaths are not large enough for tendons to pass through and so inhave trigger finger in every finger often... I hide it as best I can as I work in trades with my hands.. its getting worse, doctors in my case are absolutely useless..
Did that start after the covid vaxx?
Q impotencia
@@ronniebattle1310 Bruh.
@@daviclemons6910 Read Mark chapter 16:1-20. Ask yourself this question. Do you believe what it says? These signs will follow those who believe!
My heart goes out to all the people that are suffering with this terrible disease!!
I would bet money. All of these illnesses are vaccine induced. I just don’t think it’s healthy to inject these toxins into the human body. Heartbreaking.
she's just faking it like come on...
i suffer from it too and unless you have it you dont get it
@@hazardgirlpromotions Encounter Ministries TH-cam channel. (Mark Hemans)#
@@Danuxsy how uncompassionate of you. You must be a very miserable person.
It takes a person with a chronic illness an average of SEVEN YEARS to get an accurate diagnosis. Seven years of being poked and prodded by constant testing. Seven years of constant doctors appointments they pay for. Seven years of being referred to psychiatrists because “it’s all in your head”. Seven years of pain and illness with little to no relief. Seven years of being treated like a drug seeker because of the ER visits and the “doctor shopping,” because you can’t find a doctor to give you any answers. I’m so sorry that this woman is going through this, but I’m grateful that she finally has answers, and can get treatment and some relief. God Bless you all.
I am praying for you dearest Celine. You have given the world so much joy and lovely pleasure, Please, dont give up. You are surrounded by people worldwide who are there for you 100 per cent. Sometimes, the body our temple needs just rest. No commitments, zero stress. Walk in the forest talk to the trees smell the blossom - just chill. Dammit, if there is one woman who needs this is YOU as you have given so much of yourself to your adoring fans throughout the world. Take the utmost pleasure in the moment.
Dear Lord Jesús i pray for this woman and Celine’s healing.
Amen 🙏🏻 ❤
Dear Heavenly Father, (insert prayer), in Jesus name I pray, Amen 🙏🏼
Matthew 6 kjv
Amen
The lord didn’t pay for his monthly internet bill this month sadly the message won’t be received. I’d recommend you pray in person instead…I mean that’s how it’s always been done…no?
Amen!
So sorry for those with this nasty disease. Celine will give a voice to those who have this. ❤️🇨🇦
Yes she will. But so many others have suffered with it before her 🇺🇸
@@truckingwithtobee How many videos have you looked up about this before you knew she had it? Have any of us?
I'll be honest and admit i haven't.
The fact of the matter is that we all don't pay attention to things that we don't see day to day.
But celebrities are more visible.
They are in the limelight. Look at what Michael Fox has done for Parkinson research
@@dragonwithagirltattoo598 What is your point? I’m saying that because Celine is a well-known celebrity she can bring attention to this disease. ❤️🇨🇦
Ce n'est pas une maladie, mais la conséquence du vaccin !
If you are reading this there’s a reason……No matter how good or bad you have it,wake up each day thankful for your life.Someone somewhere else is desperately fighting for theirs ❤️🇧🇸
My heart goes out to you and what you face daily. Your courage to show us what it means to have this syndrome will hopefully bring awareness and maybe it will bring funding to study this. It takes a warrior to be so vulnerable to share this. Prayers to you and your family.
Do not get jabbbed! And you won't get this.
"CV-9 v@xcx" and ALL others!!! 💉 💉 💉
And don't worship the devil and dabble into the OCCULT / Witchcraft, like the abominable Celine Dion does!
Your *only hope is in Jesus the Christ* - the Savior of the world and the God of Israel!
And your only medicine is the HOLY BLOOD of Jesus‼️🚨⚠️
Call on Jesus to HEAL, save and deliver you, and to forgive all your sins, or you will never be healed but will die in your sins and go into eternal LAKE of fire and brimstone forever❗️
⚠️📛🔥🔥🔥📛⚠️
#REPENT and #ReceiveJesus ‼️
I have horrible and painful muscle spasms due to my Cerebral Palsy.This made me cry. Celine is my favorite singer and. I’m praying for you both.
Gott segnet Sie
LATEN WE VOOR EEN IEDER BIDDEN( OOK VOOR HEN DIE ONS NU ONBEKEND ZIJN) ..WANT DE HEER KENT ZE ALLEN💝💐😇🙏📿AMEN
ASK FOR “RSO “ Rick Simpson Oil . Trust me get ur medical MMJ card go to a dispensary and try it
What a beautiful, refined , strong woman!
@@patb9463 Encounter Ministries TH-cam channel. (Mark Hemans)#
Hate when there are idiot doctors who instead of saying they don't know what her condition is say "It's all in your head."
Class gaslighting to cover up the incompetence of the doctors!
Sometimes it is all in their head. Psychosomatic symptoms do exist.
@@direfranchement yes they do exist. But I would argue that it is far more common to actually have a physical reason for the symptoms than it is for it to be psychosomatic.
Psychogenic symptoms are tricky… and when you try to explain it to a patient, what they hear is often different from what is actually being said…and on many occasions patients will say, “So you’re telling me it’s all in my head?” There is an unfortunate stigma attached to the notion that our brains can cause physical symptoms. So when patients hear that, they automatically assume that the doctor is dismissing them as crazy.. Fortunately, that is not the case. Outcomes are variable and are hampered by the difficulty in communicating the diagnosis to patients. Psychogenic symptoms often mask underlying physiological disease. And the risks of both false positives and false negatives are high. Psychogenic is not a synonym for fake, they are usually not voluntary, and patients cannot just stop their symptoms. A psychogenic disorder is a real disorder - it is just that…the problem is with the brain’s software, not hardware. The brain is a powerful organ, and disorders of the brain can affect us physically. The effects of these disorders/ disease can be life-threatening and even terminal.
@@lilydewinters4729 Encounter Ministries TH-cam channel. (Mark Hemans)#
Thank you Beautiful Celine Dion for speaking out on this Horrific Disease. Celine Is a Voice for this Beautiful Soul and all Sufferers of this Horrific Condition. My Kindest thoughts to you and your families and Furbabies from Australia x if not for Celine Dion I would never have watched or heard of this CONDITION. 😢
Thanks for putting your self out there and sharing your pain I hope you and Celine get help you need so you can live pain-free ❤
My wife was plagued with this disease but back then no one knew what is was. The treatment is simple and has great results. A potassium sulphate drip was administered just like a pregnant person that needed to have their contractions slowed. A country Doctor used a common sense treatment that worked very quickly. My wife went years without another episode until mid 2015. This treatment was not known by any Doctors and the last time she went through this the ER doctor didn't want to listen. When she got so bad he finally swallowed his his arrogance and administered the same dose as was given to pregnant people who needed to slow contractions. Within minutes, as it did before, her episode had stopped. That was ten or fifteen years ago and we believe she is now cured.
I'm srry sir no disrespect to u but please address a pregnant WOMAN as such a pregnant woman, no such thing as pregnant PERSON
I think he was trying to be respectful with so much gender bending terminology propagated lately. It's hard to know what is proper to say these days! What us wrong with saying person? Why because childbirth is a badge of courage like no other, and women suffer so much more than men?
Not so.
makes sense to me because potassium stops and prevents cramps. So does magnesium.
Thank you. This is good to know.
William, Ur an angel in true life for telling us this ❤ BIG RESPECT & ADMIRATION TO U & UR WIFE 💖 I hope she's feeling much much better 🙏🤲🕊✝️😇 God bless 🙌
Oh Lord we pray for healing for everyone who's suffering from this evil disease 🙏🙏🙏🙏🥺🥺🥺🥺
"your lawd"??? wtf? according to your twisted belief system "your lawd" created us and the environment we live in and now you are begging your imaginary friend to heal what "it" created? this type of religiously indoctrinated drivel is beyond disgusting!
@@mcdeigo hello...I trust you are well 🙂. First of all, I never said "lawd", I said "Lord". So clearly myself and you are not talking about the same god. I'm talking about the Lord Jesus Christ ❤️ not your "lawd". Secondly, before you talk to people, kindly ensure that you have purified your inner self, so that in that way you won't have to insult people or let alone God by using words such as "wtf". Kindly clean your tongue first 😉. Thirdly, not all sicknesses are caused by God. Satan is also behind some evil diseases. But obviously you won't mention or talk about Satan because you clearly "belong to him" isn't it. That's why you are even insulting God, because you belong to your father "Satan". And for your information God the Father of the Lord Jesus Christ, he is very much loving, graceful, he is compassionate and he does heal. It is also loving to pray for the healing of others as He commanded us to pray for their healing, knowing that in his Faithfulness he will grant them healing. Instead of being rebellious as you are now, you could have been making yourself useful, particularly your tongue to be useful instead of useless, by speaking words of hope and assurance to others. These people that are sick, for your information they are praying and hoping for healing. But if they could hear someone like you speak the way you speak, indeed that's what they would call disgusting. Change your mindset, and the words that you speak will be full of life and grace for others, and you will not find yourself speaking useless words. Blessed Sunday 😊🌹
Im so sorry for everyone who’s experiencing this pain 💔
Oh this poor woman! Bless you and I feel a lot of compassion for you. I am so sorry that you're going through this!!!! SHAME ON THE DOCTORS WHO TOLD YOU THIS WAS ALL IN YOUR HEAD. SHAME ON THEM.
This had me in tears. I live with chronic pain and I'm not taking pain pills out of fear of accidentally getting addicted. My pain is 24/7. In a small way I can sort of relate to this woman. I feel trapped in my body. I pray for healing for everyone dealing with any kind of health issues.
Cameron Fradd on TH-cam shares about her suffering. I first watched her on her husband’s channel Pints with Aquinas. I had a hard time listening to the part where she talked about her suffering. It was heartbreaking and inspirational. I have an autoimmune disease and it brought me comfort.
@@user-ks3qr5fk6m Encounter Ministries TH-cam channel. (Mark Hemans)#
I'm not so much afraid of being addicted to my meds as I am of my doctors stopping them. Being at the mercy of doctors and insurance companies is scary.
@@user-ks3qr5fk6m check out link between gluten & auto immune diseases, it may help you to cut it out
@@ellakajfasz2569 You make me glad to be a Kiwi. At least we have a National Health System which is for the Public as long as you were born here & have paid your taxes all your working life. If you are disabled either physically or mentally in NZ or have a low income you will qualify to go into the public system & receive your treatment free. That's if you can find a Dr who will refer you to either the public system or a costly private specialist but you have to be rich to afford the latter.
I hope and pray they come out with a cure for this illness. ✝
I'm sick and tired when a doctor says, "It's All in Your Head!
This story hits home for me personally.
Thank you for sharing.
it was all in their arm
@@rettaabba726 Troll
When Felines husband died, it was unimaginable for her. Wondering if her neurological net just caved from having to suffer the deaths of her, mother and brother in a short period of time. Celene Dionne's voice is so beautifuI hope a cure is found for this disease. I hope she has a good chance of making a comeback. Her voice is spectacular as that of an angel.
Given the timing is it possible it's an mRna malfunction?
I really pray & wish to my god, Please help celine dion to recover her sickness soon 🙏🙏🙏🙏 & give back her strength to be normal again amin YRA 🤲🤲🤲🤲. May God bless celine dion always.......
Wow, what a horrible illness! It’s so heartbreaking to see her suffering from it! I really hope they find a cure for it very soon.
It is a vaccine injury
@@Bilangumus maybe ?
@@Bilangumus nope
@@Bilangumusnope these things have existed way before the vaccine
@@sillyfilly5528 so have miocarditis, irrelevant
I can't even imagine how painful this disease must be. I sure hope there will be a cure for it soon. My heart goes out to all affected 💔
It is excruciating... you count fractions of seconds at times, and suffer shallow constricted breathing too...
It makes me so sad that your condition was brushed off as anxiety. I am so sorry you went through that, when you were enduring so much suffering. May Jesus bring healing to you, and all who have this condition 🙏
I've never followed Celine Dion's music, but I do know she was huge. This is so sad. It's crazy sad. Everyday, I am thankful for my blessings. I'm average - neither rich nor poor. I have my health, friends, flowers in my garden, and my kitties. I am grateful.
Welcome to being a woman!! I’m also a Naples native, but anyway, I got sick at age 17 in 2004. I was dismissed and gaslit and referred to psych for SIXTEEN years before I was diagnosed, finally, with my rare disease. And ONLY after I self diagnosed and demanded the proper evaluation. I had to FIGHT and beg, and persist. It’s brutal. My diagnosis is also 1-2 per million. Cushings Disease due to pituitary tumors. Just AWFUL. Systemically rare disease patients are vulnerable and marginalized. We often can’t even get disability approved due to lack of awareness within the SSA! Just terrible. We need HELP!
I pray that something gets done,I’m so so sorry that you have gone through all of this, ,,I have recently been told I have a pituitary tumour but it’s not a problem,! But it is because I’m not mentally the same😢 all the best my dear to you x x x
@@joannesmith5853 you are lucky! If yours isn’t a problem it’s non-functioning, meaning it’s not excessively producing any hormones. Which is great. Mine is suuuuper active. Actually there is two of them! I had surgery in August but the surgeon missed them entirely! Then I contracted MRSA during my surgery as well. Has been a nightmare. So surgery failed and I still have Cushings. My heart breaks for rare disease patients.
@@joannesmith5853 thank you for the kind words and take care of yourself! IF you ever do become symptomatic, remind your Docs of the pituitary tumor and they’ll know what to test you for. 💜💜💜
@@Nat524Ricci hi could you tell me what's your main symptoms please. I'm I Ireland and have been diagnosed with a pituitary tumor as well and my cortisol levels are above normal. I was diagnosed with cushings and colaspsed and was lucky to be found in time to save my life. I was supposed to get treated further but then they discovered I had throat cancer so that was emergency surgery and chemotherapy and radiation.
My problem is I've survived the cancer after having my voice box and have my tyroid completely removed but am still waiting 2yrs later to have the pituitary tumor treated. I've put on 5 stone weight in 1 month and even though I can't really eat anymore I'm not loosing any weight. I'm thinking this is probably from the pituitary glance producing hormones.
I'm also getting a lot of neck spasms but don't know if this is from the pituitary tumor or the radiation damage and surgery damage.
So fed up no Dr's seem to be able to help and just keep saying well you survived the cancer . It's as if the pituitary tumor doesn't matter.
Mind you our health services are very bad I Ireland now unless you have private health or its a live threatening emergency and you go into hospitals through A+E.
Why "being a woman"?! What the hell does your sex have to do with this?
I am crying with her as I watch. This is heartbreaking. She, and Celine, will be in my prayers.
Thank you for being so vulnerable, ladies. I don't have Stiff Man Syndrome, but I battle more than one rare illness. 😢 My heart goes out to you both and all chronic illness sufferers/spoonies. I would speak out on some things, but I couldn't face the judgment, skepticism and cruelty of those who would focus on my not having any teeth. Medication, and illness, as well as a lot of errors made by 2 dental offices and a lab. No dental insurance for those on disability for years in my state. It's rough. I think I could cope better with the other challenges if I hadn't felt like this made me undatable and unable to do social media or many social things. I worry about my future granddaughter being ashamed of me.
ETA: Still paused. I have an idea what she faced to get a diagnosis.
I am currently still battling seizures and vision problems, head pain, respiratory problems, etc. going on 7 months, doctors don’t know why but 9 out of 10 of them love to say it’s in my head. So god damn frustrating. God bless you. Glad you got an answer and are being treated and just sorry it took so long and so much pain to get there! ❤
Or maybe FND which is technically not exactly in your head
I have complex regional pain syndrome but before I was diagnosed nearly every doctor I saw told me “it’s all in your head” every time they couldn’t figure out what it was. I started to believe it actually was in my head until a physical therapist told me what he thinks it could be.
To everyone out there suffering in silence, I see you, I hear you, and most importantly I believe you. ❤
Try the bob beck protocol. Its the cure for everything
😢😢😢😢🌹🌹👍❤️
Woman are twice as likely to be misdiagnosed with psychiatric disorders before finding their actual diagnosis. Somatic disorder / functional movement disorder / conversion disorder are all coded syndromes for "its' in your head". These all come directly from Freuds original diagnosis of "Hysteria" which only woman were diagnosed with. Freud also suggested masturbation and essential oils to cure this "Hysteria" because he though the uterus was wandering somewhere in the body. Unfortunately he is the reason that a lot people still to this day believe the trope that woman are less rational / less mentally stable and more likely to be "faking" their illnesses.
😢👍
THANK YOU 😪💔❤🩹
Stiff Person Syndrome is a scary disease!! I just can't imagine living with such a horrible condition, with your muscles aching and being stiff all the time. Thank goodness for Céline for speaking up about this illness!!
i have never cried so much over a video before.. pleaseee pray for this woman with me. 🥺🙏❤
Oh my is there no one to help her? It brought me to tears. I’m so sorry your going through this. Wow my heart and prayers go out to you.
My prayers are with you both, and anyone who is suffering 🙏🏽
Amen 🙏🏻 ❤
I had a muscle spasm in my neck when I was in my early 20s that made me unable to turn my head forward. It was stuck facing to the side for a few days. It only happened that one time like 15 years ago, and I’m still super careful that I don’t overexert my neck because I’m terrified of that happening again. The pain was that bad. I would put it almost on par with childbirth. I can’t imagine living with spasms like that all the time. I honestly would probably want to die. I feel so much for this lady and Celine and all the people suffering. Hopefully this will lead to more research ❤
I live with Endometriosis and muscle spasms like that every month, and yeah, sometimes I want to die.
what triggered it? whats the causs
@@jJust_NO_ I never got a definitive answer why. I did have a significant injury about a year before that where I tripped over a stool and fell face first into the pointed side of a bathroom counter. I may or may not have been a little inebriated at the time. Lol. Anyway, I broke my cheekbone and and pulled my neck. The spasm happened about a year after I fell, and I blame it on my moms driving. I was holding on for dear life because she drives like a maniac 😂. The doctor said I probably stretched my arm too much while I was holding on and my neck muscles rebounded. I’ve had a few little ones through the years, but nothing like that because I baby my neck. I’m fairly certain I did permanent damage when I fell. Don’t drink so much that you wipe out kids. You’ll regret it when you’re older lol
@@sadiemakesmesmile that’s terrible. I’ve heard that can be extremely painful. I hope you can find a doctor that can help. I love heard it’s hard to find a good one for that too. I’m sorry ❤️
That happened to me to at around 24. Muscle spasm in my neck it was awful and scary. I still get occasional debilatating muscle spasms in my back (like maybe twice a year) but I have medication (antispasmodic) that works realky well.
Get well soon Celine Dion and this woman also to all people who have this illness....😢❤
I’m so sorry you have this disease, just so sorry. I can’t imagine your pain. You are in my prayers from now on. ❤️🌹
Yep, was told I had depression when I told my symptoms to a doctor in Houston years ago. Given Zoloft even though I disagreed with depression diagnosis as I was in pain. After just 1 pill my heart rate went up to 160 & was visibly pounding under my pajama shirt & I felt like hot pepper sauce had been poured over my body. Called the doctor, but it was at night but I was scared. He hung up after telling me not to bother him. Took living in Singapore to get a caring & correct diagnosis of Crohn’s disease. Wasn’t depressed. Nowadays even pain isn’t real, all you have to do is eat right & stretch. Today Everything is your fault & nerves to signal real pain no longer exist. It’s a Joke. Retired RN & glad I don’t work in today’s ridiculous 🌎
You need to write or call that so-called doctor and give him your update. He shouldn't be practicing.
Dear Cynthia R....THANK YOU for sharing your story. My animals receive better care from their Veterinarian than I do from my Family Doctor. Health Care in Canada is DISGUSTING and PATHETIC. BLESSINGS to you, Cynthia.🙏🙏
@@bnice8940 well then that’s really discouraging and leaves me with little hope, because I will say from experience healthcare in Canada is better than many parts of the U.S.
But I’m sorry to hear of your experience and health struggles.
I also "love" how doctors always telling women that they just need to "lose weight" so their pain, etc, will go away.
I had asthma and couldn't breathe and my doctor told me it was just stress and to try breathing exercises.
My deep prayers for all people who suffer with this condition.
♥️
@@sylviedeblois3360 Encounter Ministries TH-cam channel. (Mark Hemans)=
@@ronniebattle1310 what do you mean by that?
@@sylviedeblois3360 Read Mark chapter 16:1-20. Ask yourself this question. Do you believe what it says? These signs will follow those who believe!
@@ronniebattle1310 🙄
Вы так нужны своим детям. Не сдавайтесь. Будьте сильной. Я люблю вас!❤
DA!
omg I want to cry, this is so sad. How bad it is...life has to go on...I wish both ladies all the best
God Bless those afflicted by this - Celine Dion is a champion for sharing this, hopefully more people will be helped ❤️
It sucks that general population only gives a damn about this because someone famous has it.
@@chrisclark692 it sucks that anyone has it.
@@chrisclark692 THANK CÉLINE .. THIS WORLD FAMOUS SINGER HAD THE COURAGE TO TALK ABOUT THIS UNKNOW AND RARE DISEASE! DOCTORS AROUND THE WORLD NOW GONNA LOOK AND SEARCH FOR A CURE !
I wish I knew this woman, I was diagnosed in 2018, and my neurologist moved out of town. Not only that, but I have a myriad of other back problems, including my spine sitting on nerves. I was always the most outgoing happy person except for my anxiety, but I could work out then. My life has been in bed for 5 years without sleeping because no Dr. will help me. It's the worst, and this video doesn't even depict what I go through. God bless you, sister.
My heart goes out to you, my father had it and I am a strong advocate where I can be. Unfortunately only some of the best will usually touch it and its awful. I hope you can do and get to where you need to be to be able to go live again. From what I know it's a very up and down thing but the ups are manageable. Best of luck, I'm rooting for you
@@kile1058 bull hip
Give up that disease, you were not born with it. The word of God says that by his sores we have already been healed.
@@jeaniesmith7387 i wish i were lying. my dad probably would have lived past 45. what good would i have to lie about as an anon in youtube comments? What do you wanna hear? I have decades worth of hell watching grieving it. I speak loudly and often because I want to raise awareness which leads to funding which leads to hope that there will be answers behind this awful disease and how to treat more than some of the symptoms. So people like Lahoma, Celine and Belinda can have the future he didn't get and deserved. So people just getting those first muscle spasms don't have to wait 7 years/they're near death just to get the correct diagnosis. I hope you can find joy and stay healthy
Belinda my heart goes to you! May God bless you and restore your health.
I'm glad Celine's public diagnosis are helping many people suffering from the same horrific cruel disease
Our prayers goes to those who are dealing with this condition
I was devastated hearing about my Queen Celine. I have seen Celine live in concert 6 times from 1998 - 2019. Celine means the world to me. The 5th time I saw Celine I took my Mom. Less than a month later my Mom passed away very suddenly. Which happened 2 days after Celine lost Renee & her brother Michael. Seeing Celine the 6th time was a godsend. The hope of seeing Celine live in concert gives me hope & happiness during many difficult times. I lost my Dad on 8-13-22. Making seeing Celine live even more important. When I heard Celine was ill I was heartbroken. I pray she & this brave woman find peace, good health, and so much more. I need Celine to help me get through my dark times. I hope Celine isn't taken away from me too!
Celine advocate for Cov vaxx ... she just need to take Covid bosster everyday to get her health back
I'm devastated to see any one suffer like this
Please be strong and thank you for sharing your story with us. God bless you.
We all unfotunately lose our loved ones and someday they will lose us, but our only hope of ever seeing them again is in Jesus Christ and his sacrifice for us on the cross. He is alive and can never die for he is the author of life and will resurect our loved ones and possibly ourselves if we pass away before he comes. If you spend time in prayer and in bible study , you will gain that great hope of a future in eternity. No more death or sorrow, disease or suffering. Eternal youthful vigor that never tires. Getting to know those who have lived and died in ages past, to meet our first parents Adam and Eve and best of all the Father, Son, and Holy spirit. This may seem incredible , but this is the reward of those who give their heart to Jesus and live according to his ten commandment law. Dont put your trust in mankind to lift you up, put your trust in God who loves you with an everlasting love and gave his only begotten son, that whosoever believeth in him should have everlasting life. Only God gets us through our dark times as we are mortal and pass on but he is immortal and says he will never leave us or forsake us. Get to know him ,you will be happy you did.
@@normahepburn1643 Encounter Ministries TH-cam channel. (Mark Hemans)#
This is truly heartbreaking. I'm glad these ladies now have a diagnosis, and are receiving adequate treatment.
I'm sure they aren't receiving adequate treatment!!!
@@katesun2957 How do you know they aren’t receiving the best treatment possible? This is a rare disease without a quick fix. Go and be mean somewhere else! Troll.
@@SJC49 I'm not a troll, I'm just smarter then you. Men get testosterone till they die. No horse urine should be able to be sold, to women as estrogen (HRT). Both women are very fine boned. Did they do a T score for them? You'd be a lousy doctor.
A research on Google tells that some treatment does help but doesn't completely diminish the pain. Imagine, sometimes I wake up in the early hours of the morning with cramps in my feet and calves. I have a good cream (Arnica) and massage my legs and feet. The pains goes away until next time (3-4 times a month). I can guess what Céline and other patients with SPS have to endure. The pain does not ever go away. And the medication actually used does cause other problems with time. It is a lose-lose situation. Praying for the woman in Naples and Céline Dion. @@SJC49
I really appreciate her showing what the spasms actually look like and how debilitating they are. Actually SEEING what happens helps a lot in understanding what it is and what it does to the body.
Thank you so much to the Naples woman for sharing this.
Prayers to all these women ...and quick recovery aswell God heals
This is so sad that the doctors dismissed her conditions 😥. May she get well soon 🙏
It's a permanent condition. Sadly, she won't be getting well, ever.
@@divahc1 Encounter Ministries TH-cam channel. (Mark Hemans)#
Because some doctors are stupid and don’t want to help. Think because they’ve never seen it it doesn’t exist and is a psych issue.
@@divahc1 Even so her quality of life could be improved with treatments.
@Mie Gravgaard Possibly, and hopefully. As such a rare condition, though, it likely doesn't attract a lot of research and funding.
I had a client who had this. I was a hairdresser, and I did her hair. It was so incredibly hard watching her go through this. Hope and prayers for more research for this disease. Thank you for sharing your story. The only way people are going to understand this type of suffering is through documentation, and you are incredibly brave for allowing us to see this. To the naysayers I sure hope you don't have to ever explain this kind of suffering and have doctors turn you away because it doesn't fit in their cute little file in their heads of what a typical day should look for them.
You are so typical of the everyday hairdresser: Empathic, capable, understanding. Lord bless you, and those you serve, with such an humble spirit. ❤️🙏💞
At least celine Deon might support more $ for research like micheal fox has.If she can cope.
Do not get jabbbed! And you won't get this.
"CV-9 v@xcx" and ALL others?!! 💉 💉 💉
And don't worship the devil and dabble into the OCCULT / Witchcraft, like the abominable Celine Dion does!
Your *only hope is in Jesus the Christ* - the Savior of the world and the God of Israel!
And your only medicine is the HOLY BLOOD of Jesus‼️🚨⚠️
Call on Jesus to HEAL, save and deliver you, and to forgive all your sins, or you will never be healed but will die in your sins and go into eternal LAKE of fire and brimstone forever❗️
⚠️📛🔥🔥🔥📛⚠️
#REPENT and #ReceiveJesus ‼️
This is heartbreaking. It hurts like hell. My heart bleeds for her. God bless her with this. My thoughts and prayers are with her daily. And with her family that they never give up hope. That they believe that the medical profession will find a cure..
I have disc disease and in constant pain and the orthopedic doctor I went to said there was nothing wrong with me and it was all in my head even though I had x-rays and MRIs to prove my condition. Instead of helping me, he referred me to a psychologist since it was "all in my head" so I can completely relate to her when she said that the doctors told her the same thing. Thankfully, I found a real doctor that did back surgery on me and said I was on the verge of being paralyzed if I didn't do something. He helped my back so I wouldn't become worse and about to have a spinal cord simulator implanted to help with the pain. I'm so sorry that she has to go through this. I pray she finds complete relief.
I can feel the awful pain that this woman suffers when she goes into spasms. I get excruciating spasms , excruciating doesn’t describe the pain.
I pray that with Celine Dion, and this woman talking about this condition that there is more done to come up with a cure. It is wonderful that this has been brought to our attention.
I from Naples, 5 generations as a matter of fact. Our medical facility's are what I believe the best in the country. Thank you for doing this story and keeping people informed!!! Truly a blessing!! Stiff persons syndrome needed to come to light. As did Parkinson back in the day. It took Michael J Fox to shed that light.
Это - горе и беда...
Я сама так болела, что, сидя на кровати, не могла сама закинуть ноги на неё, чтобы лечь...
А в туалете? Сесть- сядешь, а вот встать????????
Муж- в больнице...
Лежу на одном боку и жду, чтобы помогли тихонько встать и перевернуться на бок другой...
Это очень и очень тяжело.
Но Бог- милостивый!
Желаю Дион одного - здоровья!
Ведь не зря народная мудрость гласит: " Всё можно купить, кроме здоровья!"
Силен - УДАЧИ (по Черчиллю)!
@@user-jy8dh7il9z Encounter Ministries TH-cam channel. (Mark Hemans)\
Bless you. Breaks my heart for you.
So sad for them. That's almost impossible to live like this. Sending prayers & hope
It does not matter if you stop singing completely Ms Dion, I will still think you are a legend either way. Wishing you a speedy recovery!
There is no recovery, let alone a speedy one, unfortunately. Hopefully, they come up with better treatments soon.
@@73cidalia Encounter Ministries TH-cam channel. (Mark Hemans)#
Sadly, people still don't understand a person suffering from this type of condition unless they're educated about it or even experiencing the same symptoms themselves. I hope that people with this illness will be able to stay positive and try to live as comfortably as possible.
Many many people have never endured long bouts of pain. They just have no idea.
Bless you my dear, strong lady. I'm so very sorry. You are beautiful...and thank you for sharing this. Hugs❤
My whole heart goes out too you. I have hardly no faith in Drs. I would not want you, Celine or anyone having it!!! Thank you for sharing and Celine. God Bless you!!!!
This brings me to tears....
Wishing all of you with this all the love and care and health forever
I have interstitial cystitis and before I was diagnosed, I went to a specialist who told me after being subjected to hours of tortuous bladder tests that I just needed to stop having so much sex. I was 24 at the time and devastated because I was in a long term monogamous relationship with my husband and I said to him, I can’t even have sex it hurts too bad. He just looked at me really coldly. I will never forget him.
İ hope you are doing better. Your husband (ex?) İs heartless
No, he was fine. He never pushed the issue. It was the doctor who was such a jerk and made me feel like garbage. And misdiagnosed me because I was a woman. I appreciate your understanding and kind words.
I have interstital cystitis and I know your pain. My doctor prescribed me nortriptyline 10 mg 2 pills a day. I have been taking for years and really help me a lot . I hope you are doing better now.
@@Siriuslyyy Read again.
Thank you I will look into this medicine and see if it helps.
This diagnosis is validating for both women. That pain and difficulty is very rarely ever ‘in your head’.
What an amazing, brave lady for sharing this with us. No one can possibly understand what she, and others like her must go through on a daily basis. We can see the results but still do not feel the pain they go through to totally understand. I'm sure not much research is being done because it's not profitable, and that's always the bottom line. It must be horrific when you know the spasms are coming on. As for Drs., so many of them cannot think outside the box and are not interested in doing so. Too bad they can't go through the pain involved and then say it's all in her head!!! God bless.
Aww my heart goes out to her. No one should have to suffer a debilitating disease. My prayers are for her recovery and in the meantime that her symptoms and pain would be alleviated as they find a cure.
@harrisonjoe8579 Thank you, I agree.
God bless this wonderful woman, for sharing her story. This will help raise awareness for others who are suffering with this same condition. My prayers go out to her.
😢😢❤ that's so sad and so terrible for this woman and Celine Dion, my heart and prayers goes out for both of them and any other person dealing with this horrible disease😢😢❤
Shame on those doctors that dismissed her. Should be stripped of the medical license if that’s how that are going to treat patients who are clearly in physical pain.
I'm so sorry to hear of your pain and suffering. Prayers that this lady and Celine for a full recovery. I've had back spasms before and they are just so unbelievably painful that even breathing is difficult. I truly feel your pain.
How brave of this woman too .. to share her story. Heartfelt best wishes to both of them ..
My Heart Goes Out To All Sufferers of This Level of Pain. 🤲Prayers
God bless Celine and the rest of you that has this disease. Totally horrible! Healing prayers sent your way. ❤️
This is so sad. My heart goes out to this lady but thank her for coming forward and make the public award. Oh yes, I love Celine Dion's voice as well and feel for her as well. Keep up the fight ladies.
Sending lots of love to those people who are suffering from all illness ❤. May you be strong and blessed.
Thanks for this reasonable journalism, atleast somebody is talking about it. My dearest Celine Dion has suffered, i miss her singing!! Quick recovery to both of us. 🙏🙏
I hope she now has help with this stiffness!!! Lots a healing love to you..❤