Sometimes it takes for a person in government or of celebrity status to bring awareness to a medical condition that I and several others have been suffering from. I’m hoping researchers will use this opportunity to secure funding and find a cure, because nothing seems to lighten the pain, and most doctors and neurologists seem to still be oblivious about this rare condition.
Nope IVIG and muscle relaxers aren’t enough. I wished this news report would have talked about what treatment she’s doing & a day in her life. Although it looks like she walks great which is awesome. My fiancé doesn’t walk that gracefully anymore
I too have stiff person Syndrome. I live in horrible pain 24/7. I get IVIG INTRAVENOUSLY and steroids. I have severe Abdominal pain and it gets worse when I eat. My neck locks up and hurts it's a whole body issue. Sometimes it feels like someone is pinching my arms really hard. When it's really bad over my whole body all I can do is scream.
@@FransceneJK98 can we be rid of this by a god, it’s a degenerative disease/condition that gets more aggressive. Can Jesus fight my corner with my hospital to allow me to have IVIG again as the funding isn’t there apparently … I’d be interested in how this works?! I know you mean well, but he can’t help …
There are many people with this. I am one. It is hard to diagnose if the doctor doesnt recognize it’s neurological it. They don’t have a clue. If you get a good neurologist, as I had, they can run a panel. Im praying everyone who gets this can get treatment and diet support to conquer this and go into remission.
You have SPS? I wouldn’t say that “many people have this” - it’s one in every million!! It’s an autoimmune/neurological disorder. Mostly affects women and quite often type one diabetes which is also an autoimmune disorder. I’m a 43 year old male with type one diabetes and have a huge fight on my hands every time I need IVIG treatment on the NHS …
I had something like SPS, but not the classical type. The culprit was inappropriate prescription meds, mycotoxin poisoning, and possibly mechanical pressure on my brainstem from cervical instability. My neck and facial muscles, sometimes my chest, abdomen, throat, use to stiffen up all the time from the slightest touch or getting startled, and it would put a lot of pressure on my face. No pain for some reason, but it was extremely traumatic having my muscles lock up and watching it choke my nerves or make my blood vessels spasm such that I'd lose function when it was over. I have damage to my sense of smell and sinuses, as well as my facial and throat muscles, especially on certain branches of the trigeminal nerve. That damage is not debilitating, but it's done lasting pychologic damage, and I can still get it lying down from my cervical instability, albeit a milder form. Once I started getting mycotoxins out of my system and avoiding mold it started going away. As did cutting my muscle relaxant dose which was ironically causing whole body stiffness at higher doses. While classic SPS is a different autonimmune disease altogether, I do believe there can be root causes that can be addressed and reversed for some people.
I’m sorry for your trauma you’ve been through and are still dealing with, however for us SPS sufferers … there’s no cure and nothing can be reversed. It’s degenerative and I’ve just about had enough of this horrific situation. Like Groundhog Day. When I sleep I’m not in pain, so tend to sleep as much as possible which is not living, it’s just about existing and I’m having to beg the NHS for treatment 😢😢
I too have SPS and suffer with painful spasms daily, lasting for hours at a time sometimes. I am 43 now and was diagnosed at about 30 after 8 years of misdiagnosis and told to take paracetamol by my GP - I want to keep fighting for it and the sad fact that others will end up with this condition. Thankfully I get a little bit of relief from stronger pain meds, diazepam, morphine and IVIG but it’s hard to continue when there’s so much I/we cannot do anymore. The biggest problem is that nobody understands it or what we go through just to get out of bed. I was once a landscape gardener with a good sporting lifestyle which hurts the most. I hate having to claim benefits as I’d do anything to be able to work. Is anyone else out there in the uk?? Peace and love ❤️
@@SPS_survivor In your diet, they are called Ionic + Co-Bond + Potassium. You want Non-Ionic Potassium so when it enters your body, it becomes Ionic + Co-Bond. Through my research, we need to Bond and Non-Bonding. As for spasm, it's an Ionic Bond that creates too much "energy" which then makes a small burst in our body. In turn, we see what is known as a "Spasm". It's a weird concept, I know but most doctors and even physicists do not understand or even know it or its existence. *NOTE:* Give it a try..... $18.00 CAN save your life and pain-free.
@@SPS_survivor - *MY STORY:* Last year, my body began to stiffen up & muscle spasms, and I fell so many times. This is due to my "Leukemia" and I began to take things in just liquid and avoid 'mushrooms' too. The important elements are: Potassium (2X), Magnesium, Manganese, Chromium, Zinc, Iodine, Iron, B12, B6, B1, B2, B3, Vitamin D3, Vitamin C and a few others for maintenance and interactions. ALL MUST BE LIQUID or else you are just wasting time. After 4 months, my muscles seem to be back to normal and I can move around again. Currently, I am trying to beat Leukemia and about 75% there. Potassium = #1
It sure is, do you also have SPS? I’m not sure I can go on or if I want to prolong the pain and suffering it’s causing myself primarily but my poor mum too. She’s in her mid 70’s and has a pretty active lifestyle and I have to rely on her to help me all the time as there’s no one else. I’m just trying to figure out if it’s worth keeping on as it’s constant pain and struggling to even see the screen through my tears x
@@SPS_survivorhey. I'm sorry you're going through this. I read a couple of your comments and it broke my heart. I wish I had the ability to help heal you... I am sending you thoughts and prayers and I wish you peace. I don't know how but miracles happen every day. Try to remain optimistic in spite of your circumstances. I know it's hard but, peace, be still. I want to believe that you will get through this. 🫶🏽
SPS is the result of increased anti-GAD65. Increasing Magnesium intake does not have any significant effect on decreased spasms and debility associated with SPS.
Sometimes it takes for a person in government or of celebrity status to bring awareness to a medical condition that I and several others have been suffering from. I’m hoping researchers will use this opportunity to secure funding and find a cure, because nothing seems to lighten the pain, and most doctors and neurologists seem to still be oblivious about this rare condition.
Nope IVIG and muscle relaxers aren’t enough. I wished this news report would have talked about what treatment she’s doing & a day in her life. Although it looks like she walks great which is awesome. My fiancé doesn’t walk that gracefully anymore
I too have stiff person Syndrome. I live in horrible pain 24/7. I get IVIG INTRAVENOUSLY and steroids. I have severe Abdominal pain and it gets worse when I eat. My neck locks up and hurts it's a whole body issue. Sometimes it feels like someone is pinching my arms really hard. When it's really bad over my whole body all I can do is scream.
Does eating gluten make it worse?
Jesus can heal you completely!!! I’m serious
@@FransceneJK98 do you have SPS can I ask?
Is it the stomach organ or the abdominal muscles (i.e. sit-up muscles) that are the problem?
@@FransceneJK98 can we be rid of this by a god, it’s a degenerative disease/condition that gets more aggressive. Can Jesus fight my corner with my hospital to allow me to have IVIG again as the funding isn’t there apparently … I’d be interested in how this works?! I know you mean well, but he can’t help …
Thank you for sharing.
There are many people with this. I am one. It is hard to diagnose if the doctor doesnt recognize it’s neurological it. They don’t have a clue. If you get a good neurologist, as I had, they can run a panel. Im praying everyone who gets this can get treatment and diet support to conquer this and go into remission.
Many MORE since 2021. Did you take the cv shot?
You have SPS? I wouldn’t say that “many people have this” - it’s one in every million!! It’s an autoimmune/neurological disorder. Mostly affects women and quite often type one diabetes which is also an autoimmune disorder. I’m a 43 year old male with type one diabetes and have a huge fight on my hands every time I need IVIG treatment on the NHS …
I had something like SPS, but not the classical type. The culprit was inappropriate prescription meds, mycotoxin poisoning, and possibly mechanical pressure on my brainstem from cervical instability.
My neck and facial muscles, sometimes my chest, abdomen, throat, use to stiffen up all the time from the slightest touch or getting startled, and it would put a lot of pressure on my face. No pain for some reason, but it was extremely traumatic having my muscles lock up and watching it choke my nerves or make my blood vessels spasm such that I'd lose function when it was over. I have damage to my sense of smell and sinuses, as well as my facial and throat muscles, especially on certain branches of the trigeminal nerve. That damage is not debilitating, but it's done lasting pychologic damage, and I can still get it lying down from my cervical instability, albeit a milder form.
Once I started getting mycotoxins out of my system and avoiding mold it started going away. As did cutting my muscle relaxant dose which was ironically causing whole body stiffness at higher doses. While classic SPS is a different autonimmune disease altogether, I do believe there can be root causes that can be addressed and reversed for some people.
I’m sorry for your trauma you’ve been through and are still dealing with, however for us SPS sufferers … there’s no cure and nothing can be reversed. It’s degenerative and I’ve just about had enough of this horrific situation. Like Groundhog Day. When I sleep I’m not in pain, so tend to sleep as much as possible which is not living, it’s just about existing and I’m having to beg the NHS for treatment 😢😢
I too have SPS and suffer with painful spasms daily, lasting for hours at a time sometimes. I am 43 now and was diagnosed at about 30 after 8 years of misdiagnosis and told to take paracetamol by my GP - I want to keep fighting for it and the sad fact that others will end up with this condition.
Thankfully I get a little bit of relief from stronger pain meds, diazepam, morphine and IVIG but it’s hard to continue when there’s so much I/we cannot do anymore. The biggest problem is that nobody understands it or what we go through just to get out of bed. I was once a landscape gardener with a good sporting lifestyle which hurts the most. I hate having to claim benefits as I’d do anything to be able to work.
Is anyone else out there in the uk?? Peace and love ❤️
Start with Potassium and it must be liquid!
@@JodBronsonwhat are the benefits of potassium? I have a fair amount in my varied diet as it is? …
@@SPS_survivor In your diet, they are called Ionic + Co-Bond + Potassium. You want Non-Ionic Potassium so when it enters your body, it becomes Ionic + Co-Bond. Through my research, we need to Bond and Non-Bonding. As for spasm, it's an Ionic Bond that creates too much "energy" which then makes a small burst in our body. In turn, we see what is known as a "Spasm". It's a weird concept, I know but most doctors and even physicists do not understand or even know it or its existence.
*NOTE:* Give it a try..... $18.00 CAN save your life and pain-free.
@@SPS_survivor - *MY STORY:* Last year, my body began to stiffen up & muscle spasms, and I fell so many times. This is due to my "Leukemia" and I began to take things in just liquid and avoid 'mushrooms' too. The important elements are: Potassium (2X), Magnesium, Manganese, Chromium, Zinc, Iodine, Iron, B12, B6, B1, B2, B3, Vitamin D3, Vitamin C and a few others for maintenance and interactions. ALL MUST BE LIQUID or else you are just wasting time. After 4 months, my muscles seem to be back to normal and I can move around again. Currently, I am trying to beat Leukemia and about 75% there. Potassium = #1
😢 prayers
I wouldn't wish this even for my worst enemies 😢
It's scary
It sure is, do you also have SPS?
I’m not sure I can go on or if I want to prolong the pain and suffering it’s causing myself primarily but my poor mum too.
She’s in her mid 70’s and has a pretty active lifestyle and I have to rely on her to help me all the time as there’s no one else. I’m just trying to figure out if it’s worth keeping on as it’s constant pain and struggling to even see the screen through my tears x
@@SPS_survivorhey. I'm sorry you're going through this. I read a couple of your comments and it broke my heart. I wish I had the ability to help heal you... I am sending you thoughts and prayers and I wish you peace. I don't know how but miracles happen every day. Try to remain optimistic in spite of your circumstances. I know it's hard but, peace, be still. I want to believe that you will get through this. 🫶🏽
0:40 She found the proper treatment - video doesn't reveal what it was!!???
Vaccines
I think she needs another opinion
Magnesium citrate
Pathetic when a person goes through it, it’s w.e when w celebrity goes through it we feel so bad or w.e
Poorly done.
💔💔💔
Definitely probably a deficiency of magnesium
“Definitely probably” ??
Pecans have tons of magnesium!
SPS is the result of increased anti-GAD65. Increasing Magnesium intake does not have any significant effect on decreased spasms and debility associated with SPS.
I’m stiff right now
Rare
Wow looks like, a seizure
vax damage is the culprit
@@kate1830 covid has been around and played with since 1965
@@kate1830 2016 is the vax date but, they mutated the corona in 1966 goofy. your ignorance is worse.