I've been afflicted with this for years. I've had a variety of tests to no avail. When I read Celine Dion's story about her illness, I was amazed. Finally, a name to what has been plaguing me. Muscle relaxers and ice packs are the only relief I get. I knock on wood that I haven't had an "episode" in public. The pain is excruciating; there aren't words to adequately describe it.
Funny episode in public: In the grocery during the day with my mom. The power went out and this lady in the same isle screamed like she saw a mushroom cloud. Then there goes me totally stiffen up with my neck tipped and the spasm in my face which looks like I'm a fish that's been hooked. The lady kept screaming then pointed at me and continued to scream. It was funny later.
I've been affected for about 19 years. I'm now 71 and I've been in physical therapy for 3 months and I'm still getting spasms. My torso/trunk is the only part of my body that gets spasms but they are excruciatingly painful, lasting up to 20 minutes. Bad words come out of my mouth as I'm going through it! I haven't been diagnosed definitively yet, but all the signs are there. I'm sending prayers to all those affected. 🙏🙏
hi all I live in Russia, and since I was 16 I have been faced with a problem that cannot be solved in my country. once a month there are strong attacks of muscle spasms throughout the body it lasts 15-20 minutes my hands are clenched into a fist, my shoulders, chest, arms and legs seem to be shackled, and it becomes difficult to breathe, my tongue goes numb, my eyelids twitch, it seems like I’m dying. please, if you have any thoughts on what this could be, write!
@@debereisinger3057hi all I live in Russia, and since I was 16 I have been faced with a problem that cannot be solved in my country. once a month there are strong attacks of muscle spasms throughout the body it lasts 15-20 minutes my hands are clenched into a fist, my shoulders, chest, arms and legs seem to be shackled, and it becomes difficult to breathe, my tongue goes numb, my eyelids twitch, it seems like I’m dying. please, if you have any thoughts on what this could be, write!
I've had stiff person syndrome my entire life. in addition I have fibromyalgia, Sjogren's disease and Reynaud's syndromr. my heart the goes out to any one living with this.
The way to be sure you have stiff person is a blood test Gad test which my diagnosis was made. I first had neck surgery ( my C 3 to C 7 ) in Next Dr. was treating me for Dystonia I had steroid injection in my back muscles 10 injections each time (I almost passed out). Finally they checked my Gad and found I had SPS and immediately sent to a Muscular neurologist and put in the hospital. They tried everything to help me. I have had legs so stiff I couldn’t walk very far. I am now doing better but I’m don’t know when I will be really bad. My back spasms all the time, I have a pillow I use to sit or drive, I stay home most of the time and I can finally walk my dogs!
It’s good that Celine came forward. She has indeed raised awareness. I pray for a cure for all of you. I read that Parkinson’s may have been traced back gut bacteria inhibiting the update of some kind(s) of nutrition. I don’t know. What I do know is hearing that means people are working on this. Good luck and God bless you and your families and medical teams.
THANK God for all the husbands,friends, family that pick us up when we feel ot cannot get up, spiritually, physical therapist who get it...🩰🩰🩰🎶🎵🎼🎹🌹🍄🫂🫂🫂🫂🫂ones that listen, laugh, cry,sigh and are still there the next morning 🌄🌄🌻🌻🌹🌹❤️🩹🎹🎹thank you for all your kindness and support.....🌺🌷🫶🫶🙌🙌🙌
1. too much calcium in the body, it causes contractions; 2. not enough magnesium, it causes muscles to relax. 3. B vitamin deficiency, any neuro nerve type issue, think of B vitamin deficiency. 4. medicine drugs what is her history. 5. cvd vie russ or the medipoke both are very dangerous indeed, the latter especially.
Lauren, the disease of Stiff Person Syndrome is not caused by a nutrient deficiency. It's caused by the presence of auto-antibodies (antibodies which attack the body). Specifically anti-glutamic acid decarboxylase antibodies (or anti-GAD antibodies for short). They cause a range of auto-immune diseases including Type 1 diabetes, SPS and others. What you are referring to is just run of the mill muscle spasms that people can get from a lack of magnesium, B vitamins, too much calcium, electrolyte imbalances, etc. SPS is not the same!!
Just back from seeing the neurologist. There is definitely no cure for my auto immune disease. I'm on meds for symptomatic relief so I can walk, swallow better, have no back pain..the medication is chronic meaning I will be on it for a life time. Its so disheartening. I am going to have another full body plasma exchange next year February. I have to have this every 6 months. I'm here crying asking why me? Only 2 People in a million have this and I have it. I'm so sad today.
Sounds like muscle-skeleton inflammation which can be treated with a significant lifestyle changes. I am now living medfree of Multiple Sclerosis medication.
Every toxin, free radical and inflammatory substance will make it worse. Allergens, hormones, sugar, seed/vegetable oils, oxalates, lectins, fluoride, drugs and alcohol, pharmaceuticals, name them... Even electromagnetic fields. Dehydration and malnutrition/malabsorbtion is also in it, surely due to chronic inflammation/autoimmune disorders. Genetics play a huge part in it. All of my family have been affected. I suspect vitamin D/synapse and a blood/brain barrier disorder. Hyperflexibility is often related to this condition as well, which affects the brain structure and tissues.
Stiff Person Syndrome is caused by anti-glutamic acid decarboxylase (GAD) antibodies. Anti-GAD effects GABA in the brain. People with SPS often have other autoimmune diseases as well because of these auto-antibodies, including Type 1 diabetes. Simply supplementing with magnesium does NOT treat the disease.
@@kate1830 Makes sense. My concern is that benzodiazepines can actually cause the symptoms of SPS when taken long-term. The body makes neuroadaptations to the presence of the drug over time, sometimes very quickly, which results in downregulated GABAARs and other systemic issues, which can result in a constellation of severe debilitating symptoms for some people. Some people can be injured from almost the very start by benzodiazepines and can take years to heal, even after a slow and agonizing discontinuation.
It's not a disease; it's a syndrome. Something is triggering this. I suspect toxins in the brain, blood/brain barrier, vitamin D/synapse disorder or something related to blood sugar. Genetics and shocks (emotional, physical, viral...) make it worse. Covid vaccines and covid in peticular.
El, social media platform comment sections are littered with foreign government interference, who hire trolls to sow descent and division in this country with lies, and antigovernment sentiments
Could it be from artificial origins like invented and the "SPECIALISTS" IS puzzled ,finishing their complicated ambiguous theory sounds questionable. Also familiar.
likely too much calcium; it makes the muscles contract, magnesium makes them relax. also B vitamin deficiency for any neuro issue, wd need big doses...
This syndrome became a thing after 2020, very suspect. No one wants to address the elephant in the room. If celine Dion wouldn't have gotten it, it would've remained in the dark.
@@dekoli9957so you’re basically admitting that the only reason it’s getting attention is because awareness is being spread due to Celine Dion. “Correlation is not causation”. Study that quote.
![[SFM] Risky Recital](http://i.ytimg.com/vi/RzNkY1_Nk3o/mqdefault.jpg)
I've been afflicted with this for years. I've had a variety of tests to no avail. When I read Celine Dion's story about her illness, I was amazed. Finally, a name to what has been plaguing me. Muscle relaxers and ice packs are the only relief I get. I knock on wood that I haven't had an "episode" in public. The pain is excruciating; there aren't words to adequately describe it.
Funny episode in public: In the grocery during the day with my mom. The power went out and this lady in the same isle screamed like she saw a mushroom cloud. Then there goes me totally stiffen up with my neck tipped and the spasm in my face which looks like I'm a fish that's been hooked. The lady kept screaming then pointed at me and continued to scream. It was funny later.
😢 prayers 🙏
I've been affected for about 19 years. I'm now 71 and I've been in physical therapy for 3 months and I'm still getting spasms. My torso/trunk is the only part of my body that gets spasms but they are excruciatingly painful, lasting up to 20 minutes. Bad words come out of my mouth as I'm going through it! I haven't been diagnosed definitively yet, but all the signs are there. I'm sending prayers to all those affected. 🙏🙏
hi all I live in Russia, and since I was 16 I have been faced with a problem that cannot be solved in my country. once a month there are strong attacks of muscle spasms throughout the body it lasts 15-20 minutes my hands are clenched into a fist, my shoulders, chest, arms and legs seem to be shackled, and it becomes difficult to breathe, my tongue goes numb, my eyelids twitch, it seems like I’m dying. please, if you have any thoughts on what this could be, write!
@@debereisinger3057hi all I live in Russia, and since I was 16 I have been faced with a problem that cannot be solved in my country. once a month there are strong attacks of muscle spasms throughout the body it lasts 15-20 minutes my hands are clenched into a fist, my shoulders, chest, arms and legs seem to be shackled, and it becomes difficult to breathe, my tongue goes numb, my eyelids twitch, it seems like I’m dying. please, if you have any thoughts on what this could be, write!
I've had stiff person syndrome my entire life. in addition I have fibromyalgia, Sjogren's disease and Reynaud's syndromr. my heart the goes out to any one living with this.
Oh wow. Blessed you and others suffering. 🙏🏾
Bless you I will be praying for your family and you
Thank you for sharing your story. I'm sure you have your baby by now, so may God be with you all!
The way to be sure you have stiff person is a blood test Gad test which my diagnosis was made. I first had neck surgery ( my C 3 to C 7 ) in Next Dr. was treating me for Dystonia I had steroid injection in my back muscles 10 injections each time (I almost passed out). Finally they checked my Gad and found I had SPS and immediately sent to a Muscular neurologist and put in the hospital. They tried everything to help me. I have had legs so stiff I couldn’t walk very far. I am now doing better but I’m don’t know when I will be really bad. My back spasms all the time, I have a pillow I use to sit or drive, I stay home most of the time and I can finally walk my dogs!
Thank you for sharing your story ❤
People go through hell with her Stiff Person Syndrome (so rare!) Celine Dion has it...A new video to raise awareness was just released Love
It’s good that Celine came forward. She has indeed raised awareness. I pray for a cure for all of you. I read that Parkinson’s may have been traced back gut bacteria inhibiting the update of some kind(s) of nutrition. I don’t know. What I do know is hearing that means people are working on this. Good luck and God bless you and your families and medical teams.
THANK God for all the husbands,friends, family that pick us up when we feel ot cannot get up, spiritually, physical therapist who get it...🩰🩰🩰🎶🎵🎼🎹🌹🍄🫂🫂🫂🫂🫂ones that listen, laugh, cry,sigh and are still there the next morning 🌄🌄🌻🌻🌹🌹❤️🩹🎹🎹thank you for all your kindness and support.....🌺🌷🫶🫶🙌🙌🙌
So sad. Hoping for a cure
Such a lovely couple
So scary
God bless them!
Praying for you for a speedy recovery. Lots of love
🤔
I know you mean well, but there is no recovery. It actually progresses. I was diagnosed in 2002.
@@jensmith4005sending you love ❤
Father God bless them and bring supernatural healing! 🙏💛
It hurts!!!
being pregnant with this condition has to be terrifying. I sure hope she made it though it ok!
I thought i was dehydrated from spasms
1. too much calcium in the body, it causes contractions; 2. not enough magnesium, it causes muscles to relax. 3. B vitamin deficiency, any neuro nerve type issue, think of B vitamin deficiency. 4. medicine drugs what is her history. 5. cvd vie russ or the medipoke both are very dangerous indeed, the latter especially.
Lauren, the disease of Stiff Person Syndrome is not caused by a nutrient deficiency. It's caused by the presence of auto-antibodies (antibodies which attack the body). Specifically anti-glutamic acid decarboxylase antibodies (or anti-GAD antibodies for short). They cause a range of auto-immune diseases including Type 1 diabetes, SPS and others.
What you are referring to is just run of the mill muscle spasms that people can get from a lack of magnesium, B vitamins, too much calcium, electrolyte imbalances, etc. SPS is not the same!!
SPS is not just a neurological disease, but an autoimmune disease as well.
Just back from seeing the neurologist. There is definitely no cure for my auto immune disease. I'm on meds for symptomatic relief so I can walk, swallow better, have no back pain..the medication is chronic meaning I will be on it for a life time. Its so disheartening. I am going to have another full body plasma exchange next year February. I have to have this every 6 months. I'm here crying asking why me? Only 2 People in a million have this and I have it. I'm so sad today.
And this is what Celine Dion has…..
If I was you I would try shock therapy or try all alternative nerve treatments
Something has to help
Sounds like muscle-skeleton inflammation which can be treated with a significant lifestyle changes. I am now living medfree of Multiple Sclerosis medication.
No, it's due to the presence of auto-antibodies. Specifically ant-GAD. (Anti-glutamic acid decarboxylase antibodies).
I wonder what their diet was like before the diagnosis
or their medicine history; drugs are very suspect
Every toxin, free radical and inflammatory substance will make it worse. Allergens, hormones, sugar, seed/vegetable oils, oxalates, lectins, fluoride, drugs and alcohol, pharmaceuticals, name them... Even electromagnetic fields. Dehydration and malnutrition/malabsorbtion is also in it, surely due to chronic inflammation/autoimmune disorders.
Genetics play a huge part in it. All of my family have been affected. I suspect vitamin D/synapse and a blood/brain barrier disorder. Hyperflexibility is often related to this condition as well, which affects the brain structure and tissues.
Or perhaps even the vaccination record? People have been known to get bad batches of vaccines😢
This illness is terrible, you are lucky to have your husband taking care of you.
Prayers 🙏
Magnesium?
Stiff Person Syndrome is caused by anti-glutamic acid decarboxylase (GAD) antibodies. Anti-GAD effects GABA in the brain. People with SPS often have other autoimmune diseases as well because of these auto-antibodies, including Type 1 diabetes. Simply supplementing with magnesium does NOT treat the disease.
Symptoms are very similar to Tetanus
Amazing - so many medical “experts” in the comments.
More people have this and this is why it is rare. But it’s really this disease but doctors misdiagnose people
100%
Is there a benzodiazepine connection in these diagnoses?
Anti-GAD antibodies present in Stiff Person Syndrome affect levels of GABA in the brain. Which is why treatment includes benzodiazepines.
@@kate1830 Makes sense. My concern is that benzodiazepines can actually cause the symptoms of SPS when taken long-term. The body makes neuroadaptations to the presence of the drug over time, sometimes very quickly, which results in downregulated GABAARs and other systemic issues, which can result in a constellation of severe debilitating symptoms for some people. Some people can be injured from almost the very start by benzodiazepines and can take years to heal, even after a slow and agonizing discontinuation.
Life Interrupted!!!
Such a cruel horrible disease
It's not a disease; it's a syndrome. Something is triggering this. I suspect toxins in the brain, blood/brain barrier, vitamin D/synapse disorder or something related to blood sugar. Genetics and shocks (emotional, physical, viral...) make it worse. Covid vaccines and covid in peticular.
Oh no she will have a kid
This condition used to be okay to lived with. With covid vaccines, it got up to 11. Heart, bloodstream, digestion, walking, brain...
Ok paid troll
So how did Celine Dion get sick 15 years before the Covid vaccine?
El, social media platform comment sections are littered with foreign government interference, who hire trolls to sow descent and division in this country with lies, and antigovernment sentiments
@@Elvenpath Celine's condition wasnt that bad. The spike protein's immunotoxicity makes everything worse; that's my point!
@@Tad-For-Global-Peace paid by who? Havent received a cheque, yet! Loll
Could it be from artificial origins like invented and the "SPECIALISTS" IS puzzled ,finishing their complicated ambiguous theory sounds questionable.
Also familiar.
Calcium
likely too much calcium; it makes the muscles contract, magnesium makes them relax. also B vitamin deficiency for any neuro issue, wd need big doses...
Vita k help with calcium I heard
Read that some people are having some success with medical cannabis.
❤
Should try cannabis
I was diagnosed with SPS in 2002. Indica works best for me.
💯
@@jensmith4005how are you doing ? Are you still able to walk ❤😢
@@haninshuaib7289 I’m in pain all the time. I can walk, although my Dr wants me to use a cane. Thank you for asking.
It’s triggered by the Mrna vacinne
For sure.
This syndrome became a thing after 2020, very suspect. No one wants to address the elephant in the room. If celine Dion wouldn't have gotten it, it would've remained in the dark.
You feel like the tin man with out his oil can.
@@dekoli9957so you’re basically admitting that the only reason it’s getting attention is because awareness is being spread due to Celine Dion.
“Correlation is not causation”.
Study that quote.
@@dekoli9957 This syndrome existed far before Covid.
Read the book of John out loud. Then read psalms and proverbs out loud. Jesus still heals today. I am cancer free 19 years later.
God is great. I am so happy for you and your family ❤
Suspect wifi
COVID vaccine?
Repeat after me: not everything in the world is a conspiracy.
Nope! My daughter had this long before Covid!
So she has a baby knowing that she can pass this condition to her child. Selfish.
This is not genetic!!! Do some research before you post!