Is there anything that you can tell me about this disease that would probably or help me in trying to get a doctor to Rightly diagnosed this. I was very active running 5 mi a day working two jobs with heavy lifting and I slowly but surely just started the deteriorate with heavy spasms in my back I'm sitting here at 7:35 I've been up since 3:00 I'm very tired but still cannot sit because if I do it makes it worse I've had suggestions from the doctors that I could have lupus or multiple sclerosis but nobody does the test. But I have lots of spasms in my lower back from the buttocks to to the middle part and thoracic spine I have a lot of swelling in my hands Sandy blushing turning red. It drives me crazy. I can't stand the heat I can't stand it in the in the upper 80s I have to have it in an environment that's cool but not too hot. Certain foods I can't eat at all because it reacts to my symptoms mostly processed foods and things like that and the natural the better and organic is better for me but I haven't been a hell of a time I do have trouble with sleep apnea and very much here lately in the last 3 or 4 years trouble swallowing I'm getting choked. I get very stressed and frustratedbecause having to deal with doctors like this video says you have to constantly say the same things over and over and over again and you still don't get it you have to take medicines that make you feel even worse so I'm like I don't want to take any medicines I'm tired of jumping through hoops I'm tired of the next test and what works a lot of the time for the pain and inflammation are things that doctors don't want to take and give you like Xanax I can use that for sleep and my nerves when I'm tired of dealing with the doctors that are just not listening. I can't take gabapentin I took one gabapentin Dr gave me and my whole body went numb I scared me so bad I never took another one and tell them know you can keep that crap it it made me go into a sure panic and it took several months for that medication to leave my body. I just don't know what to do. Pain is the worst I've never been tested as far as I know for the elevated gaba 65 . They have diagnosed me with multiple skeletal disease, hypothyroid anxiety and depression I have post-traumatic stress syndrome not only for having to deal with this but other things that's happened to me in my life. I have gained up from $120 all the way I I have gained up from $120 all the way I didn't I have gained up from $120 all the way I didn't I have gained up from $120 all the way I didn't say I have gained up from $120 all the way I didn't say I have gained up from 120 lb all the way up to 255 lb the other day I'm only 5 ft tall and I am prone to falling. I had some damage during an epidural when my son was born severely nobody took responsibility for that either these doctors they just don't want to listen to me. Gaslighting is the worst of my city. Yeah this video mentioned sound when I get to where I'm very stressed out if someone were to drop a pin on the floor I just like want to jump out of my skin because I'm so addled with the situation and I want to move but then I'm so tired of worn out by the pain of the spasms in my back I don't get to sleep. I'm trying to over and over again deal with that and nobody's listening it's the hardest part like they want to watch to see what happens but they don't want to do anything because they never thought lost their study case and that's what I feel like they possibly know what it is but they're not going to treat me cuz they want to see how it progresses. Anything you can tell me that might help if you have the time. Would be help
Some of your symptoms sound very similar to those experienced by people who have PLS or ALS. I have PLS which is Primary Lateral Sclerosis. A Neurologist usually concludes a PLS or ALS diagnosis after they do an EMG test “Electromyography (EMG) measures muscle response or electrical activity in response to a nerve's stimulation of the muscle. The test is used to help detect neuromuscular abnormalities.” Try taking some Magnesium Glycinate to see if this helps ease your muscles spasms You must change your diet- cut out all processed foods, gluten, sugar, diary and soy. I bet that if you went on the Carnivore Diet that you would see some improvements relatively quickly because you would cut out ALL foods that could possibly be exacerbating your symptoms. You should look for a well experienced Functional Medicine doctor as they can run a bunch of tests that will show what areas of your body need support. Plus they can help you to determine if you have high heavy metal levels or mold mycotoxins in your body; or if you have any viruses, bacteria, fungus or parasites etc. At a minimum you should consider using an infrared sauna to help you to eliminate any toxins that you have in your body. Good Luck!
@@sharonsanderson4514 can you get a full autoimmune panel test? It will show all the immune antibodies in your blood. Then you can try to talk about those instead of your doctors guessing.
Thank you for posting this. I have been stable, but notice I'm getting weaker. I get IVIG every other month, but am getting off other drugs. Exercise helps. It's been 5 years, and though most neurologists know nothing about this, I'm researching every healing thing I can. Something as simple as scheduling a colonoscopy turned into a fiasco, because I can't explain to my nurse why I can't prepare-I take drugs to control spasms that act like seizures.
I have to be sedated for almost all testing. Everything is a trigger, and my body reacts hard. Finding medical care that is provided by people who understand is awfully difficult.
Just got Diagnosed after 6 years of dealing with this, and I have been trying so hard to find out what I can do and learn about this now that I know what is wrong with me. I am 23...I move like a 90+ year old and everyday is a living nightmare for my location.
I have this from 5 years. In first hospitality, I think it's not bad.. other options is SM, Parkinson, encephalitis. it started with the fact that for a month I could barely drag one leg at a time, until I couldn't move any of my limbs from the waist down at the bus stop.
There are probably a lot of underprivilege under insured people that have this and Don't have access to the health care to find out. The US needs to do something about this health care system. These people could afford to find out they have it. But there are many others who can't afford to get properly diagnosed.
@@monadesign1824 seems some can not come to terms that what started then could be the cause for this and many other issues and deaths taking place... logic and rational thought is gone and emotions and feelings have taken over! I have an aunt that now is suffering from cancer and my whole family will not even consider or entertain the thought it could have been caused by such a so-called altruistic medical intervention!
Y’all try to blame every sickness on that vaccine this is a rare disease the first person was diagnosed with it in the 1950’s. And who said she received the shot who said Celine got it?
Maybe 'celebrity medical warriors' is a better way to describe it. Michael J. Fox gave a very public face to early onset Parkinson's. And Celine Dion, now public with her SPS diagnosis, can do the same. THAT is the positive part. I wish both these ladies comfort, and maintaining their mobility and living pain free...
Epileptics don't stay in constant seizure, either. Doing an interview during attack is quite difficult. It is not joint stiffness, like arthritis. It is rigidity in the muscles, and often jerking. Don't be rude about what you don't understand.
No actual explanation from ANYone. Is it the Muscles, Ligaments, impacted, specificically? What is COMMONALITIES in Lifestyle, Environment, etc.?? How LONG AGO was this name Officially 'assigned', and by whom?? (Im only curious ... for discussion, is all).
It was originally called stiff man syndrome, but as time went by, they discovered women outnumber the men diagnosed. It is the muscles which react, but severe attacks result in those muscles pulling so hard against each other, it can damage the muscles, tendons, cartilage, and it has been seen that bones can be broken. It is extremely painful. It is not the same for any two people. There are various triggers which can bring on an attack, but attacks can take place without triggers too. Sometimes there are periods when it is less severe for a while, but it doesn't stay better. SPS is very difficult for family and friends over time. Thanks for caring enough to ask.
@@JoPerry-by3wdI have Systemic Scleroderma and polymyositis among others. I'm much More disabled than this lady...and Celine Dion. Without their financial resources
Everyone seems to have gotten this around the pandemic. I feel like Covid has a lot to do with this. Someone told me it was in the warning paperwork for some of the vaccines but I haven’t looked that up myself.
This disease is so horrible that no one wanted to attach their name to it. Whoever came up with Stiff Person Syndrome...OMG... sounds like a 5 year old named it.
Kundalini awakening...the symbol of the caduceous ..its even in the beginning of the video. The symbol on dr chest is symbol of health or kundalini rising awakening ..the stiff man spasms are kriyas ..research gupti krishna
Don’t think so there is more to it than that. I suffer fibromyalgia and exercise but not everyone can. I’m fact exercise of any form cal flare it. I’m an RN
She took the COVID vaccines and boosters? I was given the Swine Flu vaccine and developed GBS syndrome a auto-immune disorder like Stiff Person! I passed on the COVID vaccines and boosters!
I love the attitude of this lady much more than the way Celine is acting. The whining doesn’t bring you far, when you face a difficult time. You must conquer
Celine lost her husband and brother back to back and her mother and it is devastating to anybody. She has two young kids too. Still, she marched forward with courage We have to understand that, she was in a difficult situation at the time she made this video. She was not whining but was going through a lot of challenges with her health. So, let's not judge her. I hope she gets through this.
Okay, I thought I was the only person who thought that reporter looked like Celine Dion!
I know right 😮 I thought so too
Wow! Look like twins!
Yes she does - for a second I thought it was her. LOL
Oh snap, she does!
I was thinking the same thing!😀
OMG, Dina Bear LOOKS like Celine Dion!
After 2 back surgeries & many many tests, I was finally diagnosed with SPS in 2002. It is an big challenge, but I try to live my life to the fullest.
My mother has it had it since 2005
What test got you diagnosed?
Is there anything that you can tell me about this disease that would probably or help me in trying to get a doctor to Rightly diagnosed this. I was very active running 5 mi a day working two jobs with heavy lifting and I slowly but surely just started the deteriorate with heavy spasms in my back I'm sitting here at 7:35 I've been up since 3:00 I'm very tired but still cannot sit because if I do it makes it worse I've had suggestions from the doctors that I could have lupus or multiple sclerosis but nobody does the test. But I have lots of spasms in my lower back from the buttocks to to the middle part and thoracic spine I have a lot of swelling in my hands Sandy blushing turning red. It drives me crazy. I can't stand the heat I can't stand it in the in the upper 80s I have to have it in an environment that's cool but not too hot. Certain foods I can't eat at all because it reacts to my symptoms mostly processed foods and things like that and the natural the better and organic is better for me but I haven't been a hell of a time I do have trouble with sleep apnea and very much here lately in the last 3 or 4 years trouble swallowing I'm getting choked. I get very stressed and frustratedbecause having to deal with doctors like this video says you have to constantly say the same things over and over and over again and you still don't get it you have to take medicines that make you feel even worse so I'm like I don't want to take any medicines I'm tired of jumping through hoops I'm tired of the next test and what works a lot of the time for the pain and inflammation are things that doctors don't want to take and give you like Xanax I can use that for sleep and my nerves when I'm tired of dealing with the doctors that are just not listening. I can't take gabapentin I took one gabapentin Dr gave me and my whole body went numb I scared me so bad I never took another one and tell them know you can keep that crap it it made me go into a sure panic and it took several months for that medication to leave my body. I just don't know what to do. Pain is the worst I've never been tested as far as I know for the elevated gaba 65 . They have diagnosed me with multiple skeletal disease, hypothyroid anxiety and depression I have post-traumatic stress syndrome not only for having to deal with this but other things that's happened to me in my life. I have gained up from $120 all the way I I have gained up from $120 all the way I didn't I have gained up from $120 all the way I didn't I have gained up from $120 all the way I didn't say I have gained up from $120 all the way I didn't say I have gained up from 120 lb all the way up to 255 lb the other day I'm only 5 ft tall and I am prone to falling. I had some damage during an epidural when my son was born severely nobody took responsibility for that either these doctors they just don't want to listen to me. Gaslighting is the worst of my city. Yeah this video mentioned sound when I get to where I'm very stressed out if someone were to drop a pin on the floor I just like want to jump out of my skin because I'm so addled with the situation and I want to move but then I'm so tired of worn out by the pain of the spasms in my back I don't get to sleep. I'm trying to over and over again deal with that and nobody's listening it's the hardest part like they want to watch to see what happens but they don't want to do anything because they never thought lost their study case and that's what I feel like they possibly know what it is but they're not going to treat me cuz they want to see how it progresses. Anything you can tell me that might help if you have the time. Would be help
Some of your symptoms sound very similar to those experienced by people who have PLS or ALS.
I have PLS which is Primary Lateral Sclerosis. A Neurologist usually concludes a PLS or ALS diagnosis after they do an EMG test
“Electromyography (EMG) measures muscle response or electrical activity in response to a nerve's stimulation of the muscle. The test is used to help detect neuromuscular abnormalities.”
Try taking some Magnesium Glycinate to see if this helps ease your muscles spasms
You must change your diet- cut out all processed foods, gluten, sugar, diary and soy.
I bet that if you went on the Carnivore Diet that you would see some improvements relatively quickly because you would cut out ALL foods that could possibly be exacerbating your symptoms.
You should look for a well experienced Functional Medicine doctor as they can run a bunch of tests that will show what areas of your body need support. Plus they can help you to determine if you have high heavy metal levels or mold mycotoxins in your body; or if you have any viruses, bacteria, fungus or parasites etc.
At a minimum you should consider using an infrared sauna to help you to eliminate any toxins that you have in your body.
Good Luck!
@@sharonsanderson4514 can you get a full autoimmune panel test? It will show all the immune antibodies in your blood. Then you can try to talk about those instead of your doctors guessing.
Wow the reporter favors Celine
I was like is Celine telling the story
Did that reporter really have to LOOK like Celine? 🤯
Omg I thought Dina Bair was Celine Dion at first!!!
Omg me too! Lol
I bet that's why they picked her to report the story
Is it just me or does anyone else think the reporter looks like Celine Dion?
Did anyone else notice how much the reporter looks like Celine Dion. What are the odds.
Yes holy fuck literally every comment says it. SHUT THE FUCK UP.
Yessss. Thought the same thing lol
What an inspiration she is
Thank you! Never heard of SPS! Sending prayers to all
Not all of us thrive.
It takes a severe toll after enough years; decades.
I was hoping to hear more of her singing. I liked what i heard ❤
Thank you for posting this. I have been stable, but notice I'm getting weaker. I get IVIG every other month, but am getting off other drugs. Exercise helps. It's been 5 years, and though most neurologists know nothing about this, I'm researching every healing thing I can. Something as simple as scheduling a colonoscopy turned into a fiasco, because I can't explain to my nurse why I can't prepare-I take drugs to control spasms that act like seizures.
I have to be sedated for almost all testing. Everything is a trigger, and my body reacts hard.
Finding medical care that is provided by people who understand is awfully difficult.
I am reading a book called the myth of normal. Have you had unadressed trauma in your youth? Before the diagnosis did you suppress your feelings?
Just got Diagnosed after 6 years of dealing with this, and I have been trying so hard to find out what I can do and learn about this now that I know what is wrong with me. I am 23...I move like a 90+ year old and everyday is a living nightmare for my location.
Bests
I have this from 5 years. In first hospitality, I think it's not bad.. other options is SM, Parkinson, encephalitis. it started with the fact that for a month I could barely drag one leg at a time, until I couldn't move any of my limbs from the waist down at the bus stop.
Shocked... after 15 years ... today i was told it may be STIFF PERSON SYNDROME... I GO FOR A BLOOD TEST IN THE MORNING.
There are probably a lot of underprivilege under insured people that have this and Don't have access to the health care to find out. The US needs to do something about this health care system. These people could afford to find out they have it. But there are many others who can't afford to get properly diagnosed.
I have Stiff Person Syndrome for over 20 years
I have a question but I will leave it up to you all to guess that question.... 2021 what started in 2020?
RNA VAC.
@@monadesign1824 seems some can not come to terms that what started then could be the cause for this and many other issues and deaths taking place... logic and rational thought is gone and emotions and feelings have taken over! I have an aunt that now is suffering from cancer and my whole family will not even consider or entertain the thought it could have been caused by such a so-called altruistic medical intervention!
Y’all try to blame every sickness on that vaccine this is a rare disease the first person was diagnosed with it in the 1950’s. And who said she received the shot who said Celine got it?
@@AuNTIeGreenyou do know people can have cancer years before they ever show symptoms or get a diagnosis right?
@@ChristmasMorning1995Bot?
Good for her. I wish her all
The fullness in life
Aspartame makes me have those symptoms.
I have stiff person syndrome. Is there doctor in to help
Did they have the Celine Dion’s doppelganger do the story on purpose? 🤷🏻♂️
Wish they had more doctors. My husband has no treatment options here in ohio
Maybe 'celebrity medical warriors' is a better way to describe it. Michael J. Fox gave a very public face to early onset Parkinson's. And Celine Dion, now public with her SPS diagnosis, can do the same. THAT is the positive part. I wish both these ladies comfort, and maintaining their mobility and living pain free...
Why does Dina Bair look eerily like Celine Dion herself? Coincidence?
Always suffered from & child abused
They don’t look stiff to me.
Epileptics don't stay in constant seizure, either.
Doing an interview during attack is quite difficult.
It is not joint stiffness, like arthritis. It is rigidity in the muscles, and often jerking.
Don't be rude about what you don't understand.
So it’s basically autoimmune cp
Yes
No actual explanation from ANYone. Is it the Muscles, Ligaments, impacted, specificically? What is COMMONALITIES in Lifestyle, Environment, etc.??
How LONG AGO was this name Officially 'assigned', and by whom?? (Im only curious ... for discussion, is all).
It was originally called stiff man syndrome, but as time went by, they discovered women outnumber the men diagnosed.
It is the muscles which react, but severe attacks result in those muscles pulling so hard against each other, it can damage the muscles, tendons, cartilage, and it has been seen that bones can be broken.
It is extremely painful. It is not the same for any two people.
There are various triggers which can bring on an attack, but attacks can take place without triggers too.
Sometimes there are periods when it is less severe for a while, but it doesn't stay better.
SPS is very difficult for family and friends over time.
Thanks for caring enough to ask.
@@JoPerry-by3wdI have Systemic Scleroderma and polymyositis among others. I'm much More disabled than this lady...and Celine Dion. Without their financial resources
Everyone seems to have gotten this around the pandemic. I feel like Covid has a lot to do with this. Someone told me it was in the warning paperwork for some of the vaccines but I haven’t looked that up myself.
Do you think this is what I have?
That is a degrading sentence “stiff person syndrome “
I agree
Gerson therapy, on the Tijuana clinic that clinic cures that
I love her!!!! ❤
Yes the reporter looks like a clone of her wow
I thought the reporter was celine dion
This disease is so horrible that no one wanted to attach their name to it. Whoever came up with Stiff Person Syndrome...OMG... sounds like a 5 year old named it.
I feel bad for her because that's a huge drug bottle 😮
Check for Lyme and molds
Kundalini awakening...the symbol of the caduceous ..its even in the beginning of the video. The symbol on dr chest is symbol of health or kundalini rising awakening ..the stiff man spasms are kriyas ..research gupti krishna
I have this
So much misinformation... I get the blood test in the morning
I hope you are well
❤
Dam I think I got this
Smith Betty Hall Anna Perez John
Stiff Person Syndrome became "not so rare" after the jab.
Idiot
You are proof that idiots still thrive in 2023. 👏👏👏
You are an idiot
Exactly what I suspected
100% 🎯
again, leaky gut problem...
It’s not a leaky gut problem idiot
If you black they gone call you lazy 🤦♂️
😂😂 … terrible comment
And if you are Mexican like myself, they think its all in your head and that you are faking it.
@@MT-zi3enwe don’t care about Mexicants here.
😅😂😂😂
Y’all stop it this isn’t TikTok. 😂😂
الله يشفيك
this is so terrible =(
💉💉💉💉
Move it or lose it.
Don’t think so there is more to it than that. I suffer fibromyalgia and exercise but not everyone can. I’m fact exercise of any form cal flare it. I’m an RN
She took the COVID vaccines and boosters? I was given the Swine Flu vaccine and developed GBS syndrome a auto-immune disorder like Stiff Person! I passed on the COVID vaccines and boosters!
The myriad of disease that exist in this world is caused by vaccine and bad nutrition
I think there are so many auto immune diseases today because of vaccinations.
Based on what evidence?
@@shanicebajin4067none like always
I love the attitude of this lady much more than the way Celine is acting. The whining doesn’t bring you far, when you face a difficult time. You must conquer
People are different , celine is devastated, because she just found out about the syndrome but this lady is facing it for awhile
Celine lost her husband and brother back to back and her mother and it is devastating to anybody. She has two young kids too. Still, she marched forward with courage We have to understand that, she was in a difficult situation at the time she made this video. She was not whining but was going through a lot of challenges with her health. So, let's not judge her. I hope she gets through this.
Music is literally who entire identity, that has to be devastating to loose an epic part of her life
You are gross. Céline doesn’t owe anyone a certain attitude. She is devastated - to be expected.