Stiff Person Syndrome Spectrum Disorders
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- čas přidán 26. 08. 2024
- Scott Newsome, neurologist and director of the Johns Hopkins Stiff Person Syndrome Center, discusses the prevalence and presentation of stiff person syndrome and related spectrum disorders. He also shares an overview of diagnostic assessment and treatment options for these conditions. #StiffPersonSyndrome #JohnsHopkins www.hopkinsmed...
It is very interesting that they say they don't know what causes it, yet they can cause it in lab mice.
What do they do to create it in lab mice?
Knowing how something is triggered is a lot different from knowing how to cure it.
Thank you for explaining the spectrum. I have been diagnosed with generalized dystonia for 5 years...but I wonder if my symptoms fit better with SPS Plus. It began with lower back pain, then heavy legs and over time generalized to feet, hands, abdomen, double vision, strained voice, neck, mouth pull..it varies and is difficult to manage, especially as a mom to an incredible 11 year old. I live in NYC and if I'm upright and startled by a loud noise, I freeze. The idea of SPS having IVIG as a treatment sounds like it really improves patients mobility. Whatever I have is progressing and I'm using my mobility aids more, and am most often bedbound. I hope to meet with a Dr. someday who will spend more time with me to help me have a better quality of life.
I avoid bed only to sleep
Please have your anti-GAD65 antibody lebel tested. Unfortunately, SPS and EDS are linked-I have two adult children with both.
There’s a 2 hour train from NYC to Dr Newsome in Baltimore. Worth an appointment with him! Then a local neurologist can follow his protocol.
What a Devoted Doctor you are. God Bless You & Yours
🍀💙🍀
This is the only doctor that doesn’t make it seek like it is a one sided symptomatic story. I have been dealing with random back, legs, and feet spasms with my back locking on me and nobody knows what is wrong.
Ask if you can get an autoimmune panel blood test. It will show what things in your body are acting crazy,,. Including thyroid, GAD.
I hope you can get referred to a good neurologist who is linked to a hospital that studies neurology disorders. Mayo Clinic, John's Hopkins, Cleveland clinic.
Dr Newsome is the leader in the country for this. I highly recommend an appointment with him. His suggested protocol can be utilized by your local neurologist. That’s how I do it. Good luck.
What about spasms that lock down the patient's diaphragm and they cannot breathe and have to be intubated?
Hi Earline, please check out this link for more information: www.hopkinsmedicine.org/health/conditions-and-diseases/stiff-person-syndrome-spserpretation
Thank you for this, but a suggestion to the editor. YT videos are better without intros or extremely short intros (3s - 5s). You already have the logo in the rest of the frames.
Se de ésto. Mi hija lo padece hace casi 20 años. Tardaron 2 años en diagnosticarla, por el momento no tiene cura y además es progresiva. Pero con benzodiazepinas, inmunoglobulinas y además tiene implantada una bomba de baclofeno que la ayuda a tener mejor calidad de vida Es una enfermedad muy cruel .... Desde Bs As , Argentina
Who came here because of Celine Dione? 🙋🏻♂️
Your mother came
I came here because of me. I feel for her. I’ve been diagnosed for 13 years, after 7-8 years of misdiagnosis’ - try and keep smiling guys. Love from 🇬🇧
@@SPS_survivornow how r u I have diagnosed with sps before 1 month
We believe my mom has SPS, she has all of the symptoms but her tests come back ok. We are fighting to try to get her started on IVIG. If you would be willing to I would love to talk to you and ask you a few questions. I wish you the best. @@SPS_survivor
I didn’t (I have two adult children with SPS) but do hope it will help in research and cure developments because of its association with such a beloved entertainer.
Mine is..... C2 - c5 and then spreads...... Lound anything sets it off Stress sets it off.. and to the point that I wake up with broken ribs........ IT does BREAK BONES... normally in my sleep.....
I wonder if occupational exposure (with gloves being the only PPE) to solvents used to clean and varnish electronic circuit boards (after a repair) can cause my similar symptoms. I also serviced videojet printers for 11 months and had a headache everyday on the job. Now the Dr says GAD isn't my problem. Back in 2008, they said I suffered from a psychogenic movement disorder and former John Hopkins neurologist Dr. Paul Dash & psych Dr. Adam Rosenblatt agreed - sent me thru SSRI treatment to my detriment. VA now says no to conversion disorder but can't say what's up. I'm afraid they'll never figure it out or let me know.
I had neuropathy in my face hands and feet and felt like I was walking in water. It is a weird feeling. I slipped and fell in big puddle of plum sauce. Why is the treatment so.... costly.????
Is GAD65 result
For specific medical questions, we suggest reaching out to your doctor.
Would the trunk muscle spasms feel like flutter inside? Could it affect esophagus/stomach?
Yes. It can also cause the heart to flutter. Additionally there are times the front of my waist is pulling in towards my spine, under my rib cage, it is excruciating.
Is there a direct email address for Dr. Newsome?
Hi - you can reach his department at the following phone number: 410-614-1522
I have to wonder if it’s related to eating disorders
It certainly isn’t caused by eating disorders but gastrointestinal manifestations are common.
@@KiKiQuiQuiKiKi do they think it’s genetic or recreational drug use I wonder. I tend to think that drugs do a lot of damage long-term not the immediate future.
@@kforest2745 I’m not following. Recreational drug use/SPS?
@@KiKiQuiQuiKiKi yeah it’s always odd to suddenly develop something out of nowhere especially when it’s rare it’s gotta be drugs if it’s not genetic
Diabetes mellitus 1 and celiac disease
Me 🖐️
that probably explains why I wake up with a stiffy