Naples woman with same condition as Celine Dion shares story of Stiff Person diagnosis

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  • Опубликовано: 20 дек 2024

Комментарии • 4 тыс.

  • @sachardavids3712
    @sachardavids3712 Год назад +2198

    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.

    • @MrsBrit1
      @MrsBrit1 Год назад +128

      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."

    • @jadesea562
      @jadesea562 Год назад

      @@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.

    • @micheilakarringten7804
      @micheilakarringten7804 Год назад

      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

    • @blueSkyF.LY.
      @blueSkyF.LY. Год назад +44

      Incompetence in Medical field is unacceptable. Natural medicine has solutions

    • @healingandgrowth-infp4677
      @healingandgrowth-infp4677 Год назад +42

      @@MrsBrit1 heart attacks in women symptoms are also different to men that would make us be taken even less seriously too 😢

  • @bea29able
    @bea29able Год назад +3635

    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.

    • @jrviade85
      @jrviade85 Год назад +49

      oh yeah “POTS”
      (whatever the hell that is 🤔)

    • @gaetani100
      @gaetani100 Год назад +47

      Men as well

    • @betsybabf748
      @betsybabf748 Год назад +38

      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.

    • @laur3222
      @laur3222 Год назад +186

      @@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.

    • @oopsiedaisy1320
      @oopsiedaisy1320 Год назад +80

      @@jrviade85 so look it up

  • @jeannegross310
    @jeannegross310 Год назад +561

    Prayers for this woman. She has a lot of courage to share her story.

  • @Sitchinite420
    @Sitchinite420 Год назад +361

    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.

    • @francismarion6400
      @francismarion6400 Год назад

      They also refuse to diagnose Covid vaccine injuries

    • @rosep8481
      @rosep8481 Год назад +11

      Amen

    • @seavamp
      @seavamp Год назад

      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.

    • @mom2mmpt
      @mom2mmpt 11 месяцев назад +3

      Well said.

    • @amandamorgan2802
      @amandamorgan2802 11 месяцев назад +5

      Unfortunately, there are many such doctors.Hopefully not all.
      Sympathy and understanding were not part of their training-or they bunked that class as students.In it for $ only.

  • @cassandrarose2108
    @cassandrarose2108 Год назад +1242

    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. ❤️

    • @Bilangumus
      @Bilangumus Год назад +26

      It is a vaccine injury

    • @maymei6742
      @maymei6742 Год назад

      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

    • @Loveisabrilliantlight
      @Loveisabrilliantlight Год назад +1

      @@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

    • @babybirdhome
      @babybirdhome Год назад +16

      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.

    • @thyop89
      @thyop89 Год назад

      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.

  • @chlomyster8526
    @chlomyster8526 Год назад +319

    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.

    • @bethanybouley2990
      @bethanybouley2990 10 месяцев назад +11

      They wont recover and resume, there is no cure for this disease unfortunately....😢

  • @regwells615
    @regwells615 Год назад +928

    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.

    • @sallyj632
      @sallyj632 Год назад +40

      Same with my mother, but it was chronic Lyme Disease. They said her pain and brain fog were "all in your head". Really sad

    • @lindastina
      @lindastina Год назад +53

      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.

    • @daniellamoreno3616
      @daniellamoreno3616 Год назад +20

      Also such bad doctor it's almost as if it's malpractice!!

    • @businessoffice4964
      @businessoffice4964 Год назад +29

      I’ve lost all trust in modern medicine.

    • @edyr
      @edyr Год назад +1

      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 ↗️)

  • @ericafranklin956
    @ericafranklin956 11 месяцев назад +48

    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

    • @saintejeannedarc9460
      @saintejeannedarc9460 7 месяцев назад +5

      Bless you in your suffering. Thank you for teaching the kids for those decades when you could.

    • @arielsmith8868
      @arielsmith8868 6 месяцев назад +2

      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.

    • @journeylvr
      @journeylvr 5 месяцев назад +2

      I hope and pray that they are researching treatments for this disease! Wishing you less pain and peace. From a fellow Teacher…

    • @CarloGamboaZavaleta
      @CarloGamboaZavaleta 5 месяцев назад +1

      God bless you.

    • @olivializra5575
      @olivializra5575 5 месяцев назад +1

      God bless you Erica. I pray that you will get better and that a cure can be found xxxxx

  • @JeffeysMom
    @JeffeysMom Год назад +560

    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❤

    • @janvdb9258
      @janvdb9258 Год назад +29

      Fibromyalgia is hard too. Hope you are keeping well

    • @nickyjones2709
      @nickyjones2709 Год назад +40

      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.

    • @JeffeysMom
      @JeffeysMom Год назад +3

      @@janvdb9258 tyvm I am. Hugs

    • @maggiemorel4994
      @maggiemorel4994 Год назад +5

      I hear u .

    • @uzinine7760
      @uzinine7760 Год назад +3

      Aw tysm 😄

  • @michellescarborough16
    @michellescarborough16 Год назад +102

    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.

  • @singinwithceline
    @singinwithceline Год назад +187

    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.

    • @pestazanmomo75
      @pestazanmomo75 Год назад +1

      Gott segnet Sie

    • @mienamie4448
      @mienamie4448 Год назад +2

      LATEN WE VOOR EEN IEDER BIDDEN( OOK VOOR HEN DIE ONS NU ONBEKEND ZIJN) ..WANT DE HEER KENT ZE ALLEN💝💐😇🙏📿AMEN

    • @Humgin1234
      @Humgin1234 Год назад

      ASK FOR “RSO “ Rick Simpson Oil . Trust me get ur medical MMJ card go to a dispensary and try it

    • @patb9463
      @patb9463 Год назад

      What a beautiful, refined , strong woman!

    • @ronniebattle1310
      @ronniebattle1310 Год назад

      @@patb9463 Encounter Ministries RUclips channel. (Mark Hemans)#

  • @CJ-tu5qv
    @CJ-tu5qv Год назад +146

    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
      @TruthProvider Год назад +4

      That’s not true. Many physicians are women now a days. We aren’t in the 1950s anymore.

    • @karami8844
      @karami8844 Год назад +1

      @@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?”

    • @francismarion6400
      @francismarion6400 Год назад +4

      Where was that doctor when she needed to be talked out of getting the Covid jab?

    • @too2great8
      @too2great8 Год назад

      @@francismarion6400 Please stop with this narrative of getting the vaccine and it causing every issue under the sun.

    • @SunnyCarnivore
      @SunnyCarnivore 5 месяцев назад

      Before the brain MRI woman with MS were diagnosed with hysteria

  • @dassiemymusic3707
    @dassiemymusic3707 Год назад +366

    I'm so glad she now knows what is wrong. My heart bleeds for this poor woman. May God bless you.

    • @rg-dz4rm
      @rg-dz4rm Год назад +1

      gods doing nothing can't u see

    • @healingandgrowth-infp4677
      @healingandgrowth-infp4677 Год назад +4

      @@rg-dz4rm you can’t see

    • @-Zagros
      @-Zagros Год назад +4

      @@rg-dz4rm we are all tested by God in many different ways and illness is one of them.

    • @TheOnlyKontrol
      @TheOnlyKontrol Год назад +1

      @@-Zagroswere the Covid shots another test because I know many religious people who ended up getting them still lol

    • @ronniebattle1310
      @ronniebattle1310 Год назад

      @@-Zagros Encounter Ministries RUclips channel. (Mark Hemans)#

  • @PickleAllergy
    @PickleAllergy Год назад +166

    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.

    • @heavenlycity777
      @heavenlycity777 Год назад

      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 ‼️

    • @stephaniejackson9558
      @stephaniejackson9558 11 месяцев назад +1

      Perfect example is Christopher Reeves

    • @Agnar669
      @Agnar669 10 месяцев назад +1

      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.

    • @PickleAllergy
      @PickleAllergy 10 месяцев назад

      @@stephaniejackson9558 yes!

  • @sherryab3964
    @sherryab3964 Год назад +484

    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. ❤🙏

    • @divahc1
      @divahc1 Год назад +20

      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.

    • @sherryab3964
      @sherryab3964 Год назад +14

      @@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
      @PriyaMomma Год назад +10

      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!!

    • @sherryab3964
      @sherryab3964 Год назад +7

      @@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.

    • @leeglee111
      @leeglee111 Год назад +8

      Well said. It hurts me to see people hurting. May our Lord heal these hurting individuals. 😥

  • @heathercarpenter5497
    @heathercarpenter5497 7 месяцев назад +46

    This is why I absolutely love residents and new doctors! They're excited to help, they're more willing to listen and investigate.

    • @StephanieMowbray
      @StephanieMowbray 5 месяцев назад +4

      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

    • @sons_of_god1306
      @sons_of_god1306 4 месяца назад

      @@StephanieMowbrayyou need to detox blood from heavy metals and spirochetes. Betting money you have Lyme/coninfections. Lyme tests inaccurate because gov intentionally left out testing bands so false negatives. Most diseases are caused by spirochetes. It’s scam for them to label diseases like Alzheimer’s, dementia, Parkinson’s etc so they can sell a med that masks symptoms. Detox the blood I bet you will heal. Use biofilm busters, probiotics for mycotoxins, antifungal and antibacterial supplements mainly stuff found in tick immune support on Amazon, then binders to remove mycotoxins. MSM and oil of oregano good too.

    • @SylviaBorsch
      @SylviaBorsch 4 месяца назад

      Same here! I prefer younger doctors. As long as they're not from India. I have not had any good experiences with them at all! They gaslight you big time then act like everything is normal after you fire them! They don't understand that they've been fired.

  • @mildredperez2662
    @mildredperez2662 Год назад +588

    My heart goes out to anyone going through this. Much healing prayers

    • @cordeliamartin3077
      @cordeliamartin3077 Год назад +4

      Same i feel for them all

    • @leoniehendrickson2530
      @leoniehendrickson2530 Год назад +2

      This does need healing prayer this need to cast out that is demonic spirit

    • @GRosa
      @GRosa Год назад +1

      @@leoniehendrickson2530 🤦‍♂

    • @christinemary5864
      @christinemary5864 Год назад +2

      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.

    • @doobly140
      @doobly140 Год назад +1

      healing "prayers"? wtf!

  • @megg8566
    @megg8566 Год назад +53

    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.

    • @DD-pt9qw
      @DD-pt9qw 10 месяцев назад +1

      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.

    • @ummadam9608
      @ummadam9608 10 месяцев назад

      Look into nutritionist Mary Ruddick. She recovered from same illness as yours.

    • @megg8566
      @megg8566 10 месяцев назад

      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

  • @lea9977
    @lea9977 Год назад +268

    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.

    • @MrDmadness
      @MrDmadness Год назад +7

      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..

    • @nesq4104
      @nesq4104 Год назад

      Did that start after the covid vaxx?

    • @cere29adames2
      @cere29adames2 Год назад +1

      Q impotencia

    • @babidavi6910
      @babidavi6910 Год назад

      @@ronniebattle1310 Bruh.

    • @ronniebattle1310
      @ronniebattle1310 Год назад +1

      @@babidavi6910 Read Mark chapter 16:1-20. Ask yourself this question. Do you believe what it says? These signs will follow those who believe!

  • @janicescott7338
    @janicescott7338 Год назад +48

    Wow! This woman is a hero to me! So positive in the face of such adversity.

  • @lupepena8138
    @lupepena8138 Год назад +205

    My heart goes out to all the people that are suffering with this terrible disease!!

    • @thirstonhowellthebird
      @thirstonhowellthebird Год назад +1

      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.

    • @Danuxsy
      @Danuxsy Год назад

      she's just faking it like come on...

    • @hazardgirlpromotions
      @hazardgirlpromotions Год назад +3

      i suffer from it too and unless you have it you dont get it

    • @ronniebattle1310
      @ronniebattle1310 Год назад

      @@hazardgirlpromotions Encounter Ministries RUclips channel. (Mark Hemans)#

    • @mamihashimoto1429
      @mamihashimoto1429 Год назад

      @@Danuxsy how uncompassionate of you. You must be a very miserable person.

  • @Gurl-5150
    @Gurl-5150 Год назад +337

    My heart breaks for Celine and all that suffer from this horrible disorder.. To take her voice is to take her happiness.

    • @cordeliamartin3077
      @cordeliamartin3077 Год назад +4

      Agree

    • @deeceepnw
      @deeceepnw Год назад

      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.

    • @christinemary5864
      @christinemary5864 Год назад +8

      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.

    • @cynthiahusband106
      @cynthiahusband106 Год назад +6

      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. ❤️

  • @LV2UXO77
    @LV2UXO77 Год назад +86

    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.

    • @rettaabba726
      @rettaabba726 Год назад +2

      it was all in their arm

    • @lynday
      @lynday Год назад +2

      @@rettaabba726 Troll

  • @Aceofwolves
    @Aceofwolves 8 месяцев назад +79

    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.

    • @razrv3lc
      @razrv3lc 5 месяцев назад +6

      Literally and even more important, they can fund research. Celine Dion started a foundation to research this relatively unknown disease that never would have gotten researched otherwise due to how uncommon it is.

  • @Moving_Forward247
    @Moving_Forward247 Год назад +179

    Dear Lord Jesús i pray for this woman and Celine’s healing.

    • @joannthornton8584
      @joannthornton8584 Год назад +3

      Amen 🙏🏻 ❤

    • @LifewithBreanna_
      @LifewithBreanna_ Год назад +2

      Dear Heavenly Father, (insert prayer), in Jesus name I pray, Amen 🙏🏼
      Matthew 6 kjv

    • @arthurhudgens8213
      @arthurhudgens8213 Год назад +1

      Amen

    • @TheOnlyKontrol
      @TheOnlyKontrol Год назад +1

      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?

    • @tbong9293
      @tbong9293 Год назад

      Amen!

  • @gregthomas2448
    @gregthomas2448 Год назад +49

    God Bless those afflicted by this - Celine Dion is a champion for sharing this, hopefully more people will be helped ❤️

    • @chrisclark692
      @chrisclark692 Год назад +2

      It sucks that general population only gives a damn about this because someone famous has it.

    • @gregthomas2448
      @gregthomas2448 Год назад +2

      @@chrisclark692 it sucks that anyone has it.

    • @maggie4396
      @maggie4396 Год назад

      @@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 !

  • @williamyarbrough4967
    @williamyarbrough4967 Год назад +86

    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.

    • @robbibullock4602
      @robbibullock4602 Год назад +13

      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

    • @harry1babs
      @harry1babs Год назад +15

      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.

    • @kellio8087
      @kellio8087 Год назад +24

      makes sense to me because potassium stops and prevents cramps. So does magnesium.

    • @ummadam9608
      @ummadam9608 10 месяцев назад +5

      Thank you. This is good to know.

    • @janethompson2305
      @janethompson2305 10 месяцев назад +10

      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 🙌

  • @Jacqueline-r5d
    @Jacqueline-r5d 7 месяцев назад +49

    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.

    • @natalier2682
      @natalier2682 5 месяцев назад +1

      God bless your Beautiful Mother. I hope she is well❤

    • @ЛилияТкаченко-м2ъ
      @ЛилияТкаченко-м2ъ 5 месяцев назад

      Выражаю вам свои соболезнования. У меня мама совсем недавно умерла в 55 лет от другого менее редкого диагноза БАС, тоже болезнь 1 на 100 000 человек, тоже тяжёлое хроническое невродегенеративное неврологическое. Симптомы схожие, но там полный паралич, потому прекрасно могу вас понять. Я ухаживала за мамой и была с ней и в момент смерти, видела все её стадии. Да, это тяжело понять людям, которые никогда не сталкивались и не слышали про такие заболевания и только тот, кто прошел через эту боль или боль потери прекрасно вас поймёт. А тот кто потерял ощущает пустоту в сердце, её тяжело чем-то заполнить

  • @WillowsWhimsy16
    @WillowsWhimsy16 Год назад +32

    I am crying with her as I watch. This is heartbreaking. She, and Celine, will be in my prayers.

  • @bluerose6859
    @bluerose6859 Год назад +163

    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.

    • @user-ks3qr5fk6m
      @user-ks3qr5fk6m Год назад +5

      Cameron Fradd on RUclips 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.

    • @ronniebattle1310
      @ronniebattle1310 Год назад +1

      @@user-ks3qr5fk6m Encounter Ministries RUclips channel. (Mark Hemans)#

    • @ellakajfasz2569
      @ellakajfasz2569 Год назад +18

      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.

    • @thestu4602
      @thestu4602 Год назад +1

      @@user-ks3qr5fk6m check out link between gluten & auto immune diseases, it may help you to cut it out

    • @elseeadams
      @elseeadams Год назад

      @@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.

  • @belindatrimarchi7591
    @belindatrimarchi7591 Год назад +32

    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.

    • @kile1058
      @kile1058 Год назад +3

      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
      @jeaniesmith7387 Год назад

      @@kile1058 bull hip

    • @maydipr
      @maydipr Год назад

      Give up that disease, you were not born with it. The word of God says that by his sores we have already been healed.

    • @kile1058
      @kile1058 Год назад

      @@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

    • @teresak8530
      @teresak8530 Год назад

      Belinda my heart goes to you! May God bless you and restore your health.

  • @VitorLivingstone
    @VitorLivingstone 10 месяцев назад +22

    I pray for all those people in pain! 🙏🏽

  • @mmmmlllljohn
    @mmmmlllljohn 2 года назад +269

    So sorry for those with this nasty disease. Celine will give a voice to those who have this. ❤️🇨🇦

    • @dragonwithagirltattoo598
      @dragonwithagirltattoo598 Год назад

      Yes she will. But so many others have suffered with it before her 🇺🇸

    • @Yuri92001
      @Yuri92001 Год назад +4

      ​@@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.

    • @tammylewis9324
      @tammylewis9324 Год назад +1

      They are in the limelight. Look at what Michael Fox has done for Parkinson research

    • @mmmmlllljohn
      @mmmmlllljohn Год назад

      @@dragonwithagirltattoo598 What is your point? I’m saying that because Celine is a well-known celebrity she can bring attention to this disease. ❤️🇨🇦

    • @bibba20
      @bibba20 Год назад

      Ce n'est pas une maladie, mais la conséquence du vaccin !

  • @juliettasker9327
    @juliettasker9327 Год назад +21

    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.

  • @Nat524Ricci
    @Nat524Ricci Год назад +150

    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!

    • @joannesmith5853
      @joannesmith5853 Год назад +6

      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

    • @Nat524Ricci
      @Nat524Ricci Год назад +5

      @@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.

    • @Nat524Ricci
      @Nat524Ricci Год назад +5

      @@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. 💜💜💜

    • @lizcosgrove8199
      @lizcosgrove8199 Год назад +3

      @@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.

    • @SCharlesDennicon
      @SCharlesDennicon Год назад +3

      Why "being a woman"?! What the hell does your sex have to do with this?

  • @svenlundergard1
    @svenlundergard1 Год назад +3

    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.

  • @lonnibaird8018
    @lonnibaird8018 Год назад +61

    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 💔

    • @bluecube7247
      @bluecube7247 10 месяцев назад

      It is excruciating... you count fractions of seconds at times, and suffer shallow constricted breathing too...

  • @katlegomolokoe4437
    @katlegomolokoe4437 Год назад +58

    Oh Lord we pray for healing for everyone who's suffering from this evil disease 🙏🙏🙏🙏🥺🥺🥺🥺

    • @mcdeigo
      @mcdeigo Год назад

      "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!

    • @katlegomolokoe4437
      @katlegomolokoe4437 Год назад +2

      @@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 😊🌹

  • @AndySaenz
    @AndySaenz Год назад +158

    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.

  • @valentinacardona173
    @valentinacardona173 5 месяцев назад +3

    I'm glad Celine's public diagnosis are helping many people suffering from the same horrific cruel disease

  • @glong2720
    @glong2720 Год назад +15

    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.

  • @dawnjackson2190
    @dawnjackson2190 Год назад +30

    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.

    • @НаталияХмарская-ф3д
      @НаталияХмарская-ф3д Год назад +1

      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)!

    • @ronniebattle1310
      @ronniebattle1310 Год назад

      @@НаталияХмарская-ф3д Encounter Ministries RUclips channel. (Mark Hemans)\

  • @justananimegirl2780
    @justananimegirl2780 Год назад +16

    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!

    • @73cidalia
      @73cidalia Год назад +1

      There is no recovery, let alone a speedy one, unfortunately. Hopefully, they come up with better treatments soon.

    • @ronniebattle1310
      @ronniebattle1310 Год назад

      @@73cidalia Encounter Ministries RUclips channel. (Mark Hemans)#

  • @sheilachadbourne4093
    @sheilachadbourne4093 Год назад +36

    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.

    • @heavenlycity777
      @heavenlycity777 Год назад

      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 ‼️

  • @MrsSherrymcm
    @MrsSherrymcm Год назад +6

    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.

  • @tillysanders2593
    @tillysanders2593 Год назад +12

    How brave of this woman too .. to share her story. Heartfelt best wishes to both of them ..

  • @sadie4me2
    @sadie4me2 Год назад +18

    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.

  • @Judy.LoveandLightAlways
    @Judy.LoveandLightAlways Год назад +6

    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. 😢

  • @jesto3740
    @jesto3740 Год назад +204

    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."

    • @megnelli
      @megnelli Год назад +15

      Class gaslighting to cover up the incompetence of the doctors!

    • @direfranchement
      @direfranchement Год назад

      Sometimes it is all in their head. Psychosomatic symptoms do exist.

    • @jupitersnoot4915
      @jupitersnoot4915 Год назад +5

      @@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.

    • @lilydewinters4729
      @lilydewinters4729 Год назад

      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.

    • @ronniebattle1310
      @ronniebattle1310 Год назад

      @@lilydewinters4729 Encounter Ministries RUclips channel. (Mark Hemans)#

  • @JesusIsKing50
    @JesusIsKing50 Год назад +58

    My prayers are with you both, and anyone who is suffering 🙏🏽

  • @kellylaher7512
    @kellylaher7512 Год назад +63

    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.

    • @lulumoon6942
      @lulumoon6942 Год назад +7

      You are so typical of the everyday hairdresser: Empathic, capable, understanding. Lord bless you, and those you serve, with such an humble spirit. ❤️🙏💞

    • @sarahleach9997
      @sarahleach9997 Год назад +1

      At least celine Deon might support more $ for research like micheal fox has.If she can cope.

    • @heavenlycity777
      @heavenlycity777 Год назад

      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 ‼️

  • @FoodNerds
    @FoodNerds Год назад +25

    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.

  • @thenovicemom1093
    @thenovicemom1093 Год назад +27

    This is truly heartbreaking. I'm glad these ladies now have a diagnosis, and are receiving adequate treatment.

    • @katesun2957
      @katesun2957 Год назад +2

      I'm sure they aren't receiving adequate treatment!!!

    • @SJC49
      @SJC49 Год назад +1

      @@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.

    • @katesun2957
      @katesun2957 Год назад

      @@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.

    • @monichat
      @monichat Год назад +1

      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

  • @eleanorjaya4706
    @eleanorjaya4706 Год назад +9

    Omg watching this truly moved me. I felt so bad for this woman but what courage. I have rheumatoid arithritis, fibromaglia & stenosis of the spine but I’m lucky cause of advances in rheumatoid I been cured by these infusions. My fibro is also in control & im lucky to live in Australia where the health system is good. I pray for this woman & all others who have it including Celine. Never lose hope I did but now I believe we will find a cure for this chronic disease. 🙏🏼❤️

  • @bbsteele671
    @bbsteele671 Год назад +117

    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!

    • @maymei6742
      @maymei6742 Год назад

      Celine advocate for Cov vaxx ... she just need to take Covid bosster everyday to get her health back

    • @worldview730
      @worldview730 Год назад +7

      I'm devastated to see any one suffer like this

    • @007Julie
      @007Julie Год назад +3

      Please be strong and thank you for sharing your story with us. God bless you.

    • @normahepburn1643
      @normahepburn1643 Год назад +3

      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.

    • @ronniebattle1310
      @ronniebattle1310 Год назад +1

      @@normahepburn1643 Encounter Ministries RUclips channel. (Mark Hemans)#

  • @ГульнараМусина-у5у

    Вы так нужны своим детям. Не сдавайтесь. Будьте сильной. Я люблю вас!❤

  • @gailhitson7340
    @gailhitson7340 Год назад +14

    May God bless you and Celine! I have a very rare neurological problem for which there is no cure or fix, too. I experience similar symptoms and problems that these two ladies deal with every day. It's difficult to manage the pain, debilitating muscle spasms, and the deterioration of general physical health due to a lack of movement in response to bad pain and lack of regular exercise. I wish everyone dealing with such life altering health conditions the very best that life has to offer. May God bless you!

    • @daniel9907
      @daniel9907 Год назад +1

      Hi thanks for sharing..I myself have just got home from yet another Dr not understanding why I keep having these dibilatateing cramps high BP it's scary. I've lost most friends don't know how to get help please tell me.i was just getting over a breakup that deviated me OMG 😮😮

    • @gailhitson7340
      @gailhitson7340 Год назад

      @@daniel9907 I have no magical answers to make it all go away. There are medications for muscle spasms, and medications to assist with blood pressure fluctuations or uneven blood pressure. In my experience, all medications have a corresponding downside physically, but are still necessary at times. The best thing I have found is research and a talented physician. A good support system can be very helpful as well. If the issues are neurological, then a neurologist might have the best answers. A good support group in your area may be helpful on many levels, especially for methods of coping with specific everyday problems that illnesses can create. My very best wishes to you!

  • @Rick-tt6yq
    @Rick-tt6yq Год назад +39

    Thank you, Lahoma, for giving us insight into this horrible medical condition. Hopefully the treatments will improve over time and I think videos like this will certainly help identify/diagnose the condition. Bless you for posting this very personal story.

  • @boltoht
    @boltoht Год назад +25

    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.

    • @boltoht
      @boltoht Год назад

      @harrisonjoe8579 Thank you, I agree.

  • @killallidols
    @killallidols 5 месяцев назад

    It's amazing how Celine brought so many people together. Now, everyone with this debilitating disease feels understood, heard not lonely. Everyone who has this symptoms now they now it could be this. For such a rare medical condition and for all the rare medical conditions out there, to have a star of this magnitude, talk about something you struggled all your life and now has a name....is a miracle. Celine is a Saint. To put herself out there like that, to open a window on her own SPS episode, to reveal such vulnerability is amazing and never done before. We are used to singers of her level struggle with problems that take away their dignity. Celine is quality all around

  • @dekotahrunninghorse9372
    @dekotahrunninghorse9372 Год назад +46

    My deep prayers for all people who suffer with this condition.

    • @sylviedeblois3360
      @sylviedeblois3360 Год назад

      ♥️

    • @ronniebattle1310
      @ronniebattle1310 Год назад

      @@sylviedeblois3360 Encounter Ministries RUclips channel. (Mark Hemans)=

    • @sylviedeblois3360
      @sylviedeblois3360 Год назад

      @@ronniebattle1310 what do you mean by that?

    • @ronniebattle1310
      @ronniebattle1310 Год назад

      @@sylviedeblois3360 Read Mark chapter 16:1-20. Ask yourself this question. Do you believe what it says? These signs will follow those who believe!

    • @sylviedeblois3360
      @sylviedeblois3360 Год назад

      @@ronniebattle1310 🙄

  • @Ad_Astra2023
    @Ad_Astra2023 Год назад +10

    My heart breaks to see people like them suffering so much pain, not to mention doctors dismissing those symptoms. I sincerely hope they get proper care and treatments. 🙏🏼

  • @justineharper3346
    @justineharper3346 Год назад +147

    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 ❤

    • @sadiemakesmesmile
      @sadiemakesmesmile Год назад +5

      I live with Endometriosis and muscle spasms like that every month, and yeah, sometimes I want to die.

    • @jJust_NO_
      @jJust_NO_ Год назад +2

      what triggered it? whats the causs

    • @justineharper3346
      @justineharper3346 Год назад +3

      @@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

    • @justineharper3346
      @justineharper3346 Год назад +2

      @@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 ❤️

    • @doeeyes2
      @doeeyes2 Год назад +3

      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.

  • @daus6035
    @daus6035 Год назад +4

    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 ❤

  • @nebulascorpious
    @nebulascorpious Год назад +7

    Sending lots of love to those people who are suffering from all illness ❤. May you be strong and blessed.

  • @Natalie-ti9mg
    @Natalie-ti9mg Год назад +19

    As i watch this i cried asking God to heal her and Celine ,its hard when we as healthy people get aches and pain we feel like we want to dye ,i can only imagine the extent of the daily pain there body is dealing with and the amount of tears they shed because of the pain they feel..Its very sad ...

    • @JuliaShalomJordan
      @JuliaShalomJordan Год назад +3

      Amen.🥵🙏🏻

    • @Dasani_water_drinker
      @Dasani_water_drinker Год назад

      Why cry for a wicked person. She’s Hollywood and does not worship God. Scripture says do not pray nor weep for wicked people. Look up her clothing line. That will tell you a lot

    • @Natalie-ti9mg
      @Natalie-ti9mg Год назад

      @@Dasani_water_drinker show me the scripture where it says that

    • @Natalie-ti9mg
      @Natalie-ti9mg Год назад

      @TG dont tell me look it up since u know the entire bible and what u think God said which he clearly never said anything of such as you claim then give me the scripture that he said so..

    • @Dasani_water_drinker
      @Dasani_water_drinker Год назад

      @@Natalie-ti9mg Jeremiah 7:8-16

  • @nidiashalabi2036
    @nidiashalabi2036 Год назад +13

    It irks me each time I hear someone was told by a doctor or a medical staff member that “their pain isn’t real” or something of the sort.
    I was once told this by a visiting doctor.
    It’s always been somewhat difficult for me to show others my true emotions or if I am physical pain. The pain must have felt unbearable for me to make a face or wince. Anyway she kept checking me aggressively and told me “No! Calm down, you’re not in any pain.” The accompanying nurses looked at each other. I was so shocked and felt so completely powerless, I didn’t contest her remark (and I will always regret that).
    A week later another doctor was checking me for my pain, and she looked at me with an astounded expression and stated, “Of course you’re in so much pain. You have an infection and your insides are all swollen!”
    From that moment on I vowed to never allow anyone to tell me what I feel or don’t feel.
    Thank you to all wonderful medical staff who BELIEVE your patients.

  • @sharingchristslove7019
    @sharingchristslove7019 Год назад +14

    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 🙏

  • @Sunshine-hv6mg
    @Sunshine-hv6mg Год назад +46

    This is so sad that the doctors dismissed her conditions 😥. May she get well soon 🙏

    • @divahc1
      @divahc1 Год назад +2

      It's a permanent condition. Sadly, she won't be getting well, ever.

    • @ronniebattle1310
      @ronniebattle1310 Год назад

      @@divahc1 Encounter Ministries RUclips channel. (Mark Hemans)#

    • @katherinemazanett3030
      @katherinemazanett3030 Год назад +1

      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.

    • @miegravgaardxoxo
      @miegravgaardxoxo Год назад

      @@divahc1 Even so her quality of life could be improved with treatments.

    • @divahc1
      @divahc1 Год назад

      @Mie Gravgaard Possibly, and hopefully. As such a rare condition, though, it likely doesn't attract a lot of research and funding.

  • @houndmother2398
    @houndmother2398 Год назад +20

    Sorry to see her suffering, this looks very painful. I hope you can continue to receive good care.

  • @mallen6035
    @mallen6035 Год назад +62

    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.

    • @Siriuslyyy
      @Siriuslyyy Год назад +1

      İ hope you are doing better. Your husband (ex?) İs heartless

    • @mallen6035
      @mallen6035 Год назад +13

      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.

    • @jalipeesma
      @jalipeesma Год назад +5

      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.

    • @MsMesem
      @MsMesem Год назад +1

      @@Siriuslyyy Read again.

    • @mallen6035
      @mallen6035 Год назад +1

      Thank you I will look into this medicine and see if it helps.

  • @truegrit7697
    @truegrit7697 5 месяцев назад +1

    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.

  • @tammywebb1289
    @tammywebb1289 Год назад +45

    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!!

  • @trippyhippie147_2
    @trippyhippie147_2 Год назад +168

    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. ❤

    • @xcen1
      @xcen1 Год назад

      Try the bob beck protocol. Its the cure for everything

    • @Sarasaritta-o2j
      @Sarasaritta-o2j Год назад +6

      😢😢😢😢🌹🌹👍❤️

    • @cicim1493
      @cicim1493 Год назад +8

      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.

    • @cere29adames2
      @cere29adames2 Год назад

      😢👍

    • @elseeadams
      @elseeadams Год назад +2

      THANK YOU 😪💔❤‍🩹

  • @cynthiar7350
    @cynthiar7350 Год назад +178

    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 🌎

    • @starrfaithfull6934
      @starrfaithfull6934 Год назад +22

      You need to write or call that so-called doctor and give him your update. He shouldn't be practicing.

    • @bnice8940
      @bnice8940 Год назад +12

      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.🙏🙏

    • @trinabina3900
      @trinabina3900 Год назад +4

      @@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.

    • @wolfe6220
      @wolfe6220 Год назад +8

      I also "love" how doctors always telling women that they just need to "lose weight" so their pain, etc, will go away.

    • @zeldahylia8549
      @zeldahylia8549 Год назад +2

      I had asthma and couldn't breathe and my doctor told me it was just stress and to try breathing exercises.

  • @summerdais325
    @summerdais325 Год назад +9

    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.

  • @marilynhartman9618
    @marilynhartman9618 Год назад +5

    Celine, I wish you lots of good health and pray for your recovery. You are one special person. There will never be another person like you. You are missed greatly.

  • @JP11
    @JP11 Год назад +17

    I had debilitating fibromyalgia for over 20 years till Christy at face naturals changed my life with her health plan. Now I can walk, run, and live pain free.

  • @hirotanakawa6868
    @hirotanakawa6868 Год назад +5

    Céline is the kindest, the most generous, big hearted celeb that I know of, she doesn't deserve that illness 😭😭

  • @jennifers2233
    @jennifers2233 11 месяцев назад +1

    i have never cried so much over a video before.. pleaseee pray for this woman with me. 🥺🙏❤

  • @nicoleferguson6418
    @nicoleferguson6418 Год назад +7

    You are so brave to share this with the world. You are incredibly and thank you so much.

  • @genieinabottle2404
    @genieinabottle2404 Год назад +26

    My heart goes out to everyone having to deal with this. I can't image how difficult this must be. These people deserve so much more than the hand they were dealt.

  • @hestergreen2031
    @hestergreen2031 11 месяцев назад +1

    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..

  • @brejnhardt
    @brejnhardt Год назад +6

    This brings me to tears....
    Wishing all of you with this all the love and care and health forever

  • @bellarosa009
    @bellarosa009 Год назад +9

    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.

  • @saskiajakabfy8232
    @saskiajakabfy8232 Год назад +10

    My immune system is killing my muscles and loosing your independence is so scary…….. you have wonderful doctors and there is medication……….I got this from a virus and it will never leave my body .I hope you will get better and heal your muscles and immune system and reverse this dreadful illnesses. Sending you strength,love and prayers. Take one day at a time ❤🙏🏻🍀

  • @hylandchris
    @hylandchris Год назад +4

    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! ❤

    • @LorraineIwakashdan
      @LorraineIwakashdan 11 месяцев назад +1

      Or maybe FND which is technically not exactly in your head

  • @joanne6086
    @joanne6086 Год назад +6

    I pray for your continued strength and healing🙏...so sorry you and Celine are dealing with this.

  • @HaseenaChandni
    @HaseenaChandni Год назад +25

    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.

    • @MsMesem
      @MsMesem Год назад

      Many many people have never endured long bouts of pain. They just have no idea.

  • @rhythmtapper
    @rhythmtapper Год назад +6

    How terrifying, and to have no control. I hope they help each other through. God bless them both, and everyone who suffers with this condition.

  • @SylviaBorsch
    @SylviaBorsch 4 месяца назад

    Thank you so much for showing this segment! It really helps me with my diagnosis journey myself. I think there should be a part 2 with her telling how her journey began with he like how her illness started, what medicine she's actually taking, her beginning spasms and how they started, and how she walks on a normal day with mild stiffness? It would help out so many people like me!

  • @annadfrangoulisart
    @annadfrangoulisart Год назад +6

    Wishing no one to be diagnosed with stiff persons syndrome ❤❤ wishing all who have been diagnosed a better day and lots of good help around them.

  • @monicark2030
    @monicark2030 Год назад +35

    As my former bf who is a physician always said to me;
    'Certain ppl get a degree as medic/physician, and think they are gods, that patients are just annoying ppl, to draw attention". But we live in our bodies; sometimes a negative result doesn't solve the enigmas but the symptoms are there, and lab exams show no positive results, and I said to a resident having a negative exam, does not mean I don't have a disease or a condition.
    I got a rare tumor, and lots of other issues that were undiagnosed my whole life, perhaps since the age of two years old.

    • @lentilneeds
      @lentilneeds Год назад +8

      I am a medical student. I don’t know everything. In fact I’m very very very very very far from it and I never will. And that’s something doctors have to learn to accept. I was diagnosed with a rare tumor that left me disabled for life and I only got answers due to the amount of insight I had and being so persistent to the extent I was labeled annoying. Even post diagnosis to this day there are people who think I’m being disabled for attention and most people I know are doctors or medical students. Makes me very really sad. I hope one day I can do more for people who are plagued by all this suffering.

    • @sharong8511
      @sharong8511 Год назад +1

      @@lentilneeds
      I love your willingness to admit you don’t know everything. With my deepest respect I think you will be excellent at your job.

  • @christinemary5864
    @christinemary5864 Год назад +119

    I've had stiff person syndrome for 17 years now. So many of us have similar symptoms and also different ones. It's a very hard Neuro/autoimmune disease to live with. Also, if you have a good day and dress up and have makeup on you can look normal which is hard for us to hear because of all we go through. Took them 12 years to dx me until I went to the Mayo clinic.

    • @nikkyshairades9078
      @nikkyshairades9078 Год назад +7

      How are you doing now ma’am

    • @patriciadupree3636
      @patriciadupree3636 Год назад +4

      Praying for you 🙏🏼

    • @kristineanderson4983
      @kristineanderson4983 Год назад +3

      I understand what you are saying. I have ME/CFS and Fibro, which bring a host of other problems. I wasn't treated properly and my family wasn't supportive, so I'm now in a wheelchair, which didn't have to happen!

    • @christinemary5864
      @christinemary5864 Год назад

      @@kristineanderson4983 I'm so sorry you weren't treated properly either. I've had zero infusions because they want 20k. I fell through all the cracks of the medical system, just in June Northwestern was shocked I've had nothing no matter how many packets for help i did, or calls, or letters nothing. It sadly feels it's all about the money and how much can we charge someone or let them slip. I'm so sorry, you weren't treated properly and that you had no support. Many don't understand that when you get sick people literally abandon you. They can't handle it, or they just stop being friends with you if you have to cancel with them. Even if not cancelling there is an excuse that you learn means you are no longer friends for something you didn't cause to yourself.
      I will have to look up what ME is, the one condition you listed. I know you don't know me, but if you ever want to talk or become friends id really like that. We can understand what it's like.
      I will check here if you leave a reply. I'm horrible with Instagram messages but I'm good with these messages or TikTok messages too under Christine Mary. Hope to hear from you

    • @christinemary5864
      @christinemary5864 Год назад +2

      @@nikkyshairades9078 so sorry I saw this now I apologize. According to northwestern it's progressed. Medicines are always monitored and switched around for quality of life. More diseases come with it so I've gotten another one. I also had to have my tonsils out as a singer and after 6 weeks need a min of 6 more before I can return back to the vocal coach and I pray I get my voice back sooner than later. I also tore my foot again and no one knows how so back in a boot. I wish online it would talk about how SPS is followed by so many other conditions that it is almost a full time job to keep up with appointments. Thank you for asking 🙏

  • @wendypetersen7529
    @wendypetersen7529 Год назад +1

    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.

  • @lalifromcali6439
    @lalifromcali6439 Год назад +4

    She is amazing for sharing and educating us. So many of never heard of it

  • @RR-kz4hq
    @RR-kz4hq Год назад +45

    My mother had a rare tumor (1 of 30 in the world) a pro insulanoma with symptoms like passing out from having too low blood sugar. So many docs told her she was anxious and having anxiety attacks but my mother already has anxiety and also is a retired Nurse Practioner so she kept advocating for herself and eventually they found it and were like wow there’s less than 30 of these cases in the world but I’ll never forget my mother telling me how she struggled to find diagnosis and treatment. Everyone just wanted to prescribe Ativan and get her to leave.

  • @kholoudalpha5368
    @kholoudalpha5368 Год назад +9

    Im so sorry for everyone who’s experiencing this pain 💔

  • @amyaiken576
    @amyaiken576 11 месяцев назад +2

    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. ❤️🌹

  • @kimharris9226
    @kimharris9226 Год назад +12

    Oh gosh that was hard to watch, how heartbreaking. I feel very sad for this lady and now poor Celine 😢 it will certainly be a major life adjustment as is any health issue