Dr Scott Newsome Explains Stiff Person Syndrome
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- čas přidán 16. 07. 2024
- In this exclusive interview, Scott Newsome, DO, Department of Neurology at Johns Hopkins Medical describes stiff person syndrome, a rare neurological condition that often takes several years to be properly diagnosed.
For more information about the condition, visit www.hopkinsmedicine.org/neurol... - Věda a technologie
Stiff persons syndrome has affected my daughter she was diagnosed in 2011 after years if trying different treatments that haven't worked .she is in a indouced coma and is receiving plasmapheresis. I would like everyone to o keep her in their thoughts and prayers Thank you.
Has she tried medical marijuana?
mary helen Carrillo I had plasmapheresis
Mary you don't know me but I just wanted to tell you that I understand bc I have the disease myself and I know how horrible it is and I will keep your daughter in my prayers esp. We don't know just how long I've had it bc I had MS too and I never told my doc about my symptoms bc I thought the MS were causing symptoms and one day I told him and I was tested 3 times, all positive but I'm SO very sorry for you and your daughter. The only thing worse than being sick yourself is seeing your child sick.
My daughter has just recently been diagnosed with as well. It's a very difficult sickness to understand and even more difficult to get doctors to get on board with treating this. I will be praying for you an your daughter.
@@inograce35
I’m here because I just heard Celine Dion has this disorder. She was diagnosed pretty fast after her initial symptoms. I’m praying for all who suffer from this .
Same. I hope she's gets better
Absolutely! 🙏🏽
I am devastated for Celine. Hoping for the best.
There's no cure!
Pray to God Celin Dion gets much better very soon she is one of the most wonderful singers in the world , God bless her soul .
I was diagnosed after five years of seeing more doctors than I can remember. I am a 58 year old man and this nightmare took away my job, my freedom, my friends... I could go on but even I'm sick of talking about it. Thank you SO MUCH for this video, it explains this disease in a way I never could. Take care...Joe
I know what your going through be strong.
I was also diagnosed with this kind of disease 5nyears ago.
When i was 11 years old , i noticed it.
It started in my legs.
Now I'm 25 years old my feet to neck are stiffed and it hurts so much.
They weren’t your friends in the first place. If they were truly you friends, they would’ve stuck by your side.
It took me 15 years to get diagnosed and I went to so many doctors. I finally had to put the pieces together in part due to Dr. Newsome’s videos and research.
🌷🌻🌼🌷🌻🌼
SPS is a lonely place to be. It is made worse by all the misdiagnosis. Friends and family get tired of hearing it is one thing, then nope, it isn't that. Finally they become convinced we are either pretenders or crazy. When we are finally on the right track, we can feel the difference, but to them it is just another thing. They are tired of medications that make us moody or lethargic. They are tired of hearing us say we don't think this doctor gets it.
It is tough for us to experience the pain, embarrassment, frustration and fear, but it is tough for them too. What they see is someone who cancels plans, breaks promises, makes excuses, and complains all the time.
SPS is a relationship killer. A relationship which withstands the gales the condition hurls, is a rare and beautiful thing.
I've lost people too.
My mother just died of this in September2021,no one at her health care facility helped her an called her crazy . I pray they find a cure for this ,or at least a better treatment plan
I'm very sorry for your lost. 😞🙏
How ignorant many doctors are. When they don't know something they're 🤔 "it's not real", "you're faking it", you're exaggerating". 😑
I've been struggling to get right diagnosis for years.
My ex boyfriend who's doctor (German) was ignoring me most of the time, he changed a lot when I began to get sick (years ago). We were going to get married but finally he didn't want to.
I've been struggling to get medical attention. I'm not in the US.
He was telling that is Fibromyalgia and advise me to go to psicotherapy and he said that I should stop looking for.
I don't know if I have this disease yet, I'll get the tests. I'd rather know than not to know. I have other's autoinmune diseases.
It's awful. But I hope to get right diagnosis soon. I'd love to have quality of life.
Warm Regards.
Blessings ❤️
I'm sorry for your loss.
Waiting for blood test results
I was told I have MS, but now there's some doubt. We will see, staying positive!
I’m so sorry for your loss. I know that it’s been over a year but I am just seeing it. I was finally diagnosed in 2017, after being misdiagnosed with ALS for almost 1 1/2 years. It’s all horrific, and so many aspects to it other than just the disease. Al of the other losses. Jobs , friends, problems with family members, etc. I pray that they find a cure also because there are times that I wish I was with your mother than still here on earth.😔
So sorry for your loss ❤️ praying for your family& a treatment for this.
WHOLE BODY VIBRATION PLATFORM! It has helped me get out of the wheelchair because of the intolerable spasms. Please look into this for anyone suffering with this. It's my miracle to be able to move in the morning
My goodness, such a horrible disease and hope there will be a cure or at least some worthwhile treatments. Sending love to all who are suffering from SPS ❤
I am proud of my man who suffers from this disorder, he still keeps going & works currently not sure for how long & hope to bring awareness to this disorder.
I am dealing with what I believe is Stiff Persons Syndrome currently. I have had lumbar surgery with a laminectomy from L2 to S1 and a discectomy and a discectomy from C4-c5. I have had pulmonary emboli and a DVT in my right arm along with two other superficial clots in the right arm. I began not being able to stand with the walker for about 1 minute or less before I would tremble severely and fall to the ground. Even before my surgery, I would have these seizure-like muscle spasms that would last for hours at times. Previous to that, I had a back muscle that locked down for over 8 months while trying dry needling, the tens unit, massage, heat, and ice. Absolutely nothing would get this muscle to stop spasming until I had my surgery. Now I have a number of muscles that lock down or twitch severely without control and experience a shocking feeling through my body and am having partially blank vision, double vision, and my arms and legs lock up along with every muscle in my neck, abdomen, chest, and back. Legs included. This can go on for hours. The longest that I recall is 31 hours of hard-core spasms without a break until the correct combo of medication was administered. The most effective medicine combination is Valium 5mg and Dilaudid 4mg PO forms at the home, of course, at the minimum. This will usually give me some relief in roughly 20-50 minutes, depending on the severity. At the larger severity, 5mg of IV Valium is administered if available. Otherwise, it is Advan injected in the rump, and it took about 30 minutes for all of that to take effect for a bit of peace.
I have been to Piedmont Atlanta, Hospital, Atrium Navicient Hospital Macon, which had set me up to go home and live with the pain because they were releasing me to the community due to the fact that there was nothing they could figure out. The GNI Neurosurgeon said "It is not that there is nothing wrong with your spine, it is that there is so much that I don't feel able to repair the conditions and I needed to be somewhere like Emory University Hospital to better care for me."
I hired a private ambulatory service because Atrium Navicent refused to log a transport. I went to Emory and entered the ICU because I couldn't walk. Dr. Heller performed his surgery, and I was able to move both of my legs and stand up. The next day, the PT gentleman let me sidestep. The next day, I was able to walk just over 350 steps with excellent posture.
Now, I'm back to not walking. I'm angry with what is happening. The neurologist here did explain to me that they have the blood panels back and a likely diagnosis of stiff person syndrome.
Is there any more information about John's Hopkins that you may extend to me about securing a bed there for a proper diagnosis and information on treatment options. Thank you for your efforts and time with this matter.
Highest regards,
Daniel R. Smith
Just recently diagnosed. Thanks to Dr. Newsome. I’m an RN and put the pieces together bc I was dx with high GAD 65 autoantibodies after I developed sudden T1DM. I went to the research and saw the connection between high anti GAD 65. Went to neurologist with my findings, and they agreed. I’ve had symptoms for 15 years since I was dx with autoimmune hyperthyroidism. Thank you Dr. Newsome for your research and advocacy, and for publishing these videos. You’re the best!!
Bless your heart
Dam, sorry to hear that and best of luck to you.
Michele you should do a video rehearsing your diagnosis story.
Celine Dion has just announced she is afflicted with this neurological disease . She has been canceling appearances and tours for more than a year . Prayers for all 🙏🏻✝️🙏🏻
Yes Celine reveals her condition. Let's pray for her fast recovery🙏🙏
That's very sad. I was devastated myself hearing this about Celion
I don't see her ever performing again with this disease
I believe this is exactly what I suffer with. I need a specialist to assist me with this. This disorder mimicks fibromyalsia. I have all the symptoms and I have stated for year's the muscle spasms are horrific and the stiffness and heavy legs are just a few symptoms. No one is listening to me...very painful and exhausting.Some day's are better than others.
1 person in a million today means that 789,000 people are affected.
This You Tube clip offers great insight into what Stiff Person Syndrome (SPS) is all about.
KEEP MOVING Help Rare Autoimmune Diseases can u help me
Celine Dion was just diagnosed with this 😢
There is too much variation in SPS, making it hard to diagnose and hard to treat....and to few cases for trials.Good luck to everyone out there, I'm praying for you from within
My husband was misdiagnosed for 10 years. He's fighting a losing battle with no help here in Cleveland:(
If it's so rare, why is it showing up more and more within the last few years and more on the news?
Brilliant way to explain it. Thank you.
Thank you so much for making this video. I finally have figured out this is what I have & knowing is truly only 1/2 the battle. I have a long road ahead.
How did u figured it out ? I had horibble sudden spasms on my lower back and abdomen at the same time and it took like half an hour for the pain to go away and it keeps happening every week . Im thinking it might be this disease but im not sure
@@baharetezad424did you ever get it figured out? Same thing happens to be but locked for a couple days, now 2 1/2 years later I need a cane because I cannot stand up straight most days.
Wonderful short video with a lot of information, thank you!
Awesome video,grateful ,thanks so much,
My sister is 57 and has been diagnosed with this. She is stiff from head to toe. She is now in a long term care facility. She was working a full time job 6 months ago. She has had a couple ivig treatments and a couple plasma exchanges but they only worked for a week or so.
Oh my! I am so sorry. I’m friends with a young girl in tik tok and it’s pretty rough on her. I had to learn more because she has such a sweet spirit. It is such a rare and painful disease. It sounds like Hopkins is doing some good studies from this video.
Age has no bearing on SPS. It affects all people from birth, onward. Just as people were used to believing that "Shingles" was a disease of the elderly, it affects all ages.
@@FreeSpirit47 true.. My daughter had shingles when she was 19.
Been diagnosed for a year now. IVIG has helped slow the progression of my disease.
Thank you for sharing your story. (I know it was several years ago.) The first I heard about SPS was just a couple days ago when I saw Celine Dion’s video. I pray you’re doing better now.
Excellent talk.
Is this problem related to excessive stress? Celine Dion was under so much stress with her husband's cancer and death! She seemed like she was grieving intensely! She lost so much weight too!
I've been wondering the same thing about stress. For me, it's chronic stress, and I seem to have the symptoms of SPS (although not yet diagnosed).
Male 65 GADD-14 Negative. Responded to Clonzazapam and Neurontin. Poss for vitiligo. Poss for truncated dystonia, drop syndrome and tremor. Also had resolved case of PMR that responded well to prednisone. History of cervical injury and MRSA infection on thecal sac. 12 years ago as firefighter. Would appreciated input from Neurological MD Arizona.
Hello dr.Newsome. I live in small country in EU. Croatia. I was lucky to have diagnosed my SPS: trunk and legs, soon after I realised that is not psychological problem. My pshycatrist had dineyed everything I suggested. So, I am a woman who was than 45 y.o. and found neurologist who discovered antiGAD in my blood. She gave me diazepam. In the beginning I didn't have pain but 2016. After big stress I started to have strong painfully spasms in my back. That was horrible. I am sensitive to laud, touching and can't walk alone.
Sorry about my English...I learned another language. Question: can I get now, after ten years diabetes?
i just lost a friend with this disorder and he couldn't get the help he needed because Veteran Affairs wouldn't help him set things up to get him going with treatment. He tried to get into John Hopkins and was turned away. Why?! I want answers as to why he was turned away and why the VA didn't help him more.
Write/share his story with your local Congressman's office , ask that question.
He didn’t FIGHT HARD ENOUGH. HE SHOULD GAVE CALLED A NEWS STATION WRITTEN LETTERS SCREAMED LOUDLY GOR HELP. EVERY SINGLE DAY. HE SHOULD HAVE HAD SOMEONE LIKE YOU STANDING UP FIR HIM AND DOING ALL THAT WIRK. BOMBBARDING EVERYONE AND ANYONE. IM SO SORRY BUT ITS ONLY THE SQUEEKY WHEEL THATS GETS THE GREASE. IM APOALED AS IM A VETERAN MYSELF. APALED !! I’m so sick of all the begging for donations for veterans. Homes etc. our government needs to build all handicapped veterans of war a perfect home. We give billions out like candy around the world but our injured war veterans come home and suffer in a regular home and the community then begs for donations. It’s criminal Biden what he’s done. Just criminal. Now Biden want free health cate for million coming illegally in outback yards. All I’ve seen are well dressed well fed healthy mostly YOUNG NEN. CRIMINAL BIDENWILLOAY GIR THIS AND ONAMA THAT STARTED THIS
Because he is a citizen.....they canf get any help, but an illegal can get anything they want
They have had to come out and admit these so called "Stiff" Syndromes because it probably is an epidemic at this point for reasons I will not get into. Hint: Immune Mediated Response. I know myself personally I have been engaging the system, not backing down and I doubt I am the only one.
I was also diagnosed with this kind of disease 5nyears ago.
When i was 11 years old , i noticed it.
It started in my legs.
Now I'm 25 years old my feet to neck are stiffed and it hurts so much.
PS: I CAN WALK , RUN ,JUMP.
WHENEVER I USE FORCE. MOST OF THE TIME MY MUSCLES STIFFED.
I hope you're doing okay. Sorry to read about your pain with this condition. ❤️
I started noticing symptoms when I was really young too. I got diagnosed in 2012. I’m 33, and hurt all the time.
What did your legs feel like? I am being tested. I have had chronic pain in my legs for 15yrs.
@@msjr1765 for example when i am using stairs. I cant really climb well in stairs ,
After taking 3-4 steps, i would just stop because it hurts if i will make a step. I would wait 5-8 seconds to take steps again and it doesn't hurt at all.
@@jen2196 thank you. I am doing fine for now.
I hope it will not be worse.
seria interesante que subtitulen en español los videos. salidos
I have these symptoms. It has taken away my life. I cannot find help.
I can't afford to travel. My doctor is doing what she can for me without an official diagnosis.
If you can, make sure you don't have any of the similar but unrelated conditions such as ms.
I am helped somewhat by gabapentin. It is an anti seizure medication, but gets used for lots of other issues too.
Keep these videos close at hand whenever you see any doctors, because what's more rare than SPS, is medical professionals who have ever heard of it. Most ERs have no idea what to do with a severe rigidity episode.
Whether this is what you have or not, I'm sure your suffering is real. I wish calm for you.
There are actually support groups on FB for people behave this. Mostly we are just there for each other when things get bad.
The first thing to do is go on a carnivore diet. This will allow the gut barrier to regenerate and help tone down the autoimmune problem.
I'm here after Celine Dion announcement
Me to they say there is no cure for it that’s so sad….
I saw a Neurologist last week and he mentioned he thinks I might have this. I had to have a blood test. Next a full MRI of my spine. I've already had 2 back surgeries because of falls. One laminectomy and discectomy and in 2007 a spinal fusion. Now I need another spinal fusion above the last one.
So so sorry.
Make sure they check the GAD antibodies and your T cells. I don't know all the technical terms but the level of GAD antibodies is a major feature of SPS. Just make sure they do these tests. My first doctor only did a spinal tap and a brain MRI. The initial diagnosis was MS. Then I went for a second opinion at a university hospital - the top one in California and their tests showed SPS. This was confirmed by another set of tests. It took about 2 years but as bad as it is to have SPS it's better to know so you can start treatment. Best wishes!
The good part of having my disease is I went holistic in most of my treatment. What this meant for me was I know what was happening in my body most of the time. I knew how my muscles were effected and how it moved and affected my body and mind at any given time... I hate the fact that I have all this knowledge and cannot afford insurance to go to these places and give information on how this disease moved in my body. When and how it accelerated and what seems to help me most in fact that my system has been purer to what happens me while to others using more medications, I have mostly been on only one.
I have had it now for about 18 years and the doctors have not been able to do anything because when it started they knew nothing about stiff person syndrome that have been a lot of improvements toward diagnosing it and also treating it but my legs have become so rigid from the hip area to my back I can no longer sit up on my own my spinal column has been affected
Find...if possible a neuromuscular specialist at a university. Often they will treat for free or at a very reduced rate. Sps is so "rare " (which I don't agree with) a chance for treating a rare disease patient is an opportunity for them
Celine Dion diagnostic sent me here, scary disease, I truly hope they find a cure for this🙏🏾
Same... I just watched her video 😢. It sounds so awful for her. Bless her and keep her. 🌷🙏
I feel so sorry for her.
How can I contact the correct people at john Hopkins? I've had sps for at least 30 years. Interested in the fact hyperlordosis is involved. I have lordship, kyphosis and scoliosis. Being that GABA is so involved, what are the emotional/intellectual and immune system problems that might present. Besides watching muscular atrophy, ataxia etc... I do not respond correctly in high stress situations , which is highly unusual considering I have a double dose of the MCR1 gene, which usually makes us a good person to have around in high stress Situations. Any insights or information greatly appreciated.
I'm here, because Cellin Dion.
my friend has that. so rare
How do I get a hold of this doctor. My doctors do not believe me. The muscle spasms are killing me.
Are the muscle spasms like having a Charley Horse?
@@daren5666 yes, and one that won't let go, just stays rigid.
Just read all this. How are you doing these days? Im having muscle spasms, severe pain, you name it, but nobody seems to believe me. Since 2012. They say, well you look fine! Im in dire pain 24/7. My dr just writes out scripts for useless meds.
Do you feel finding it early on (if possible?!) can help prevent it from coming on, full force? Early detection is usually hopeful in all other disorders, diseases, etc., or many, anyway 🙏
Tried getting in with him and I was told I needed to get a workup from a general neurologist, as though I haven't done that and seen an immunologist based on the amount of records I submitted. I doubt he even bothered looking through my file.
I have this, after cancer, surgery, radiation, coma severed artery during surgery, massive infection and b6 blood clots. Bam! Then I am recovering from all this while locked in my muscles and spasms. I'm healing and gaining strength after 5 years of Horror. I was never diagnosed, my doctors were flummoxed.
Does anyone know of a link between taking gabapentin and developing this disease? Or of any supplements or natural treatments for it?
Reminds me of lupus in that it is hard to diagnose. Another auto immune disorder. Lupus too has T and B cell dysfunction, because the two do not communicate.
I have seen so many of these different types of diseases I just wonder if they're manufactured?
Boa noite! Alguém poderia me passar os contato do Dr. Scott?
How can I contact Dr Newsom?
Thank for sharin g. i have stiff person syndrome. diagnosed for 6 plus years
How about calling it Stiff Body Syndrome?
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.
Sounds like a cousin of MS
Absolutely...sound like my daughter who has had m.s for 10years
I've heard about SPS in specific types of diabetes. I have no idea how they are related!?!
So I have a question so I know that you look at different rare diseases have you looked at Williams Syndrome any it's a rare one
Doesn’t sound that Rare!
What are the options for a patient with SPS and CRPS. IVIG treatments don't see to work and hard to get insurance to pay every time.
Try plasmapheresis treatments. I got diagnosed back in 2012. Ive been dealing with it since I was a kid. I’m only 33.
Is it like ankalosing spondylitis ? Cause I can just loose my balance and fall then I have trouble getting back up, I’ve just had a few R F A treatments I’ve had this going on since around 1996 app,thank you for reading this message
Are there any clinical trials or current research studies going on? DX: SPS 6/16 after 9 years misdiagnosed as fibro and MS.
Go to clinicaltrials.gov and enter "stiff person syndrome". There is one autologous stem cell transplant treatment by Dr Richard Burt at Northwestern, but I don't know of anyone who has had a response to his protocol. My Dr has one patient who went through it with no improvement. His protocol has been fairly successful in MS though.
clinicaltrials.gov/ct2/show/NCT02282514
Stiff person syndrome
Nathaniel Ziering stiff person
This is interesting...any EEG changes during the attack i wonder...???
I am very concerned that this is a side effect like Beibers face paralysis. Neurological side effect to be precise. Not enough care put in to whether this is becoming more common with the introduction of an experimental vacks?
PLEASE... TALK MORE ABOUT GAD65! WHAT ARE PATIENT LEVELS? WHAT DO YOU THINK ABOUT 105 WHILE ON IVIG?
Have you ever tried plasmapheresis treatments?
Never be jealous because you just never know!! If you don't have your health your$$ & all those fans👏 mean 0...in reality she will need 24 hour care at some point in time!! A lesson in gratitude!!
I think if not for Celine Dion’s affliction, I would not have known about this disease. Maybe she will give a lot of her money to research, so that will be gratitude. Maybe that’s God’s plan, cause any rich man can’t bring a penny with him, when he dies. But as I read the comments, it’s so sad that not everybody gets the best care at well known hospitals. Only the rich and those who have good insurance and good connections seemed to get the best doctors. Health is wealth.
Can a person Stiff-person syndrome pass it to their offspring
3 factors need to be present to develop an autoimmune disorder 1. genetic susceptibility 2. immunre regulation 3. environmental triggers - with only one missing you won't have the disease - a wise man said in his video. Plus GFdiet is an effective therapeutic intervention. They say it's not curable bc it is genetically predispositioned but it doesn't mean you can't be asymptomatic.
Please help I’m lowkey scared been happening for 3 years and made me have really bad anxiety... so everytime I stand up my right side of my body goes dead sometimes left side and I can’t control myself muscles do what they want and it sucks im only 20. And I feel like when I get anxious it gets worse
Have you tried CBD oils bro
@@boberto1976 yea but only helped for like that hour than had to reuse which was annoying but after like 2 months of using CBD and doing workouts I found online it helped now I get them like once a week and not nearly as bad
Is this like m.s. myen ?
Well maybe I have this then
Check out Pain Free You on CZcams - Dan Buglio discusses TMS Tension Myositis Syndrome (aka Too Much Stres) well worth a look folks . Scared brain being overprotective and producing symtoms.
I surely will! I worked at a very stressful job for almost 21 yrs, then they closed it and gave me a FOUR DAY NOTICE! Im in so much pain, especially in the mornings. I cant stand to be touched, because it hurts! If I get down in the floor on my knees, when i try to get up, it feels like someone is slicing my knees off with a hot flaming blade!! Im on pai meds, arthris meds and Cymbalta, which is an useless as teats on a boarhog!!! I keep alot inside. Im behind on my house, along with all kinds of other debt! Please pray for me!
I knew it!! T cells are also involved!!! Perhaps Neutrophils also play a role in the complex immunopathology of this condition.
My daughter is 27 I think this is what she have we have been to hundreds of doctors lots of tests and nobody can tell us nothing they say is migraine there they said it may be a muscle other one said it's all in her mind but they don't know and still seeing doctors can you please help me please somebody
Dear Sharon, I'm also 27 and have beem diagnosed with Stiff syndrome after 3 years. I went through everything what you wrote - from doctors telling me it is migraine, others that it is in my mind because they never saw anyone with that kind of a pain in back and leg. Later it spread to my other leg, neck, head.. but I was just too presistent. I know it has been 9months since this comment and I hope she got her diagnose and treatment
my body becomes stiff when 3-4 steps in stairs and i stop for a few seconds then continue, when my knee bends in a certain angle it freezes which occures everytime just like when sitting then stand up...when i bend it intentionally to prevent stiffness it still happens..i have this problem for about 3 years, i stopped playing basketball although i jump high, i get stiff from the first to three jumps i have been avoiding such tasks and not know what to do someone please help me... i dont feel pain, but it put me at risks sometimes im 16 years old male...
We're the same.
The stairs are killing me
Can i contact you? ZED?
I have same prob bro
When i walk on stairs first 2-3 steps it stiff my legs hard
I'm having similar symptoms in the last 5 years and it's progressing. What would you suggest I do to test for this? Doctors just think it's anxiety and depression and though the meds help to a degree, I need real solutions. My mom has lupus and all kinds of problems.
I used to street race in my 20s and I'm 40 now and can barely be in a car for a short ride without muscles tensing up in my stomach and hands.
I need help or I need to be studied.
Celine Dion condition brought me here.
Prayer for her🙏🏻🙏🏻
The only talk I've heard on these videos about a cure - and this was recent and this video is 6 years old - was one doctor saying a hidden cancer in the body can cause SPS and if you can remove the cancer the SPS will go with it. So anyone so diagnosed should be given a complete, total and full screening for cancer. But the bad news is only a very small percentage of people with SPS have a hidden cancer so it's a rare cause for a rare disease.
My feet
My cheeks are tighter than captain falcon’s
I came here because another doctor said this is a side effect from gluten intolerance
It definitely makes it worse. I have given up gluten and a host of other things.
But it's not a cure. Worth a try though. 😊
Edit: Just noticed this comment was a year ago. How are things going for you now?
You still don’t want me there? Joke like Mayo ✌️
Celine dion has this
If you have this how can you breathe?
I told my neurologist, "When it hits my whole body twists around and holds & I can't breathe until it releases". He said it could be stiff person syndrome. Just gave me Botox in my neck & back muscles. Ativan helps a whole lot to stop spasms.
Can pseudo seizures occur after with the stiffness?
So it’s like the fainting goats but the triggering is random instances
no, you don't faint or seize.
How to know if this is no just lack of exercise?
No there are blood markers.
DR SCOTT CAN YOU CONTACT ME DIRECTLY SO I MAY GET MORE INFORMATION ABOUT THIS AS I HAVE BEEN DEALING WITH THIS FOR SOME YEARS WITH MY WIFE AND NO DOCTOR CAN EXPLAIN WHAT THE HECK IS HAPPENING TO HER WHEN THIS OCCURS, WE WOULD BOTH REALLY APPRECIATE ANY HELP AS HER PAIN ON MOST DAYS ARE VERY EXTREME. SORRY FOR THE CAPS FORCE OF HABIT
Clutch iLLLogic1123@gmail.com I suffer from sps shoot me an email and id be more than glad to give my opinion
Ill Logic1123@gmail.com
this guy is on Megan's LIST.
I think of Gabor Mates work in relation to this and in relation to other conditions of auto immune origin ... Interesting women are the main gender with this ... Again Gabor Mate makes reference to gender in reference to auto immune conditions ... Of course there is the medical physiology also important to understand the trigger factor ... What lies beneath ...
You were to good buddy? Now this da and governor lifes are going to be harder than they ever knew
I have it I have severe spasms so bad I think I’m having a heart attack and sometimes I hear my bones crack in as my teeth turn almost completely around
Y'all I'm picturing a Charley horse all through the body...is it something like that?
En español ..😭😭 no entiendo nada ..
Celine Dion ❤️
To be honest, the disease really is just a different form of multiple sclerosis. Too many names/labels for the same illness.
I hope you have the credentials to back up such a bold statement. I don’t remember reading anywhere about demyelination with SPS. These people took years get diagnosed. There were many doctors involved. But I guess they were all wrong.
Celene Dion just got diagnosed. Q the interest. At least it gets some interest now. Horrible disease.
The Vaccination, more cases now???
The jab gave my sister Graves disease. She was super healthy before that. I took tge jab ( regretfully), and my stiffness and pain is alot worse. I feel like I wont live long. I cant go much longer in so much pain. .
I have this now because of taking a decade of klonopin. It’s completely ridiculous that a drug dud this to me.
Hi I also am having this issues after stopping klonopin after 7 years. I haven’t been diagnosed yet but it’s completely interfering with my life and I suffer greatly. How did you get diagnosed and what was the treatment? Are you able to lead a normal life ?
@@georgehernandez5204 Klonopin/Clonazepam is a treatment for SPS, I'd ask your doctor about the possibility that you already had it and the Klonopin was masking/treating it
I understand! I had all the side effects from KLONOPIN. I have muscle spasms now. Pain meds doesn't help...I'm very weak on my left side. I was also taking 5000mg of keppra daily for seizures from auto accidents.
Seizures took away my short term memory. I don't know what a seizure feels like. I pray we all recover.
I’ll bet mast cells play a big part.
Fuck..
a lot of my relatives are like this,
and it´s because of inbreed.
You mean it is genetic?
@@klattalexis yes
Bullshit
There’s always some new disease