I’m starting to believe more and more that I have stiff person syndrome. After listening to you I believe it even more. I’ve been to so many specialists with no answers. My primary care doc definitely believes that my problems are neurological and is sending me to a better neurologist at UW medical center. Hopefully I will get answers.
I was fortunate enough that someone ordered a neurology panel my 3rd trip to the ER. Initial diagnosis was dystonia, but there was clearly a huge number indicating GAD antibodies. Only other number was a 1 for hypothyroidism.
So many similarities and the variety of problems are in the hundreds. I could see your right leg in spasms. My symptoms started in the trunk muscles as I can remember from toddler on up but with thalidomide birth defects I never knew why till years after it hit me hard. Like you I got stiffer in the trunk muscles and had painful trouble with bike seats and motorcycle seats which if were narrow enough I fared better. A few years of really bad seating problems and stiffer trunk muscles plus completely the legs when bending or kneeling which became unbearable in seconds when I was hit really hard and I started falling, walking so slow with deliberate tiny steps. I struggled to keep working about another 14 months then it hit my arms bad which I was using to help my legs. That was it! When my doctors watched all my muscles constantly moving they said I'm done working and going on SSD. It's been badly down hill since with now the total horrible distorting limbs spasms concentrating on my obviously deformed side.
Thanks for posting your journey. Have been looking for others who explained their symptoms. I was diagnosed in 2018 after about a month of stiff legs and also ended up going to Johns Hopkins last November. I'm being treated by VA and am going to have to confront my doctor, who wants to change meds out of concern for memory loss. I want to keep function as long as possible. Will pray for you and your family.
Is loss of words part of SPS? Im starting this journey and trying to figure out what is wrong with me. Its way more than just loss of words but watching you reminds me of what i go through. Thank you for sharing your journey
I am very similar symptom wise and and also in the upstate NY area , I'd love to compare symptoms and possibly have someone to relate to , I feel for you ! Hope your having a good day ❤️
Thank you for your openness. It does help and is appreciated. What is your Facebook page? It’s helpful to learn from others who have been doing this longer than me. 💜
Thinking and watching this, sending and HOPING PRAYING you and your family are doing better🫂🫂❤️🩹❤️🩹🫶 heart wrenching....yes, the recumbent bike is what I am doing, ....hang in there,🩰🩰🩰❤❤
Hi. I’m a mama of 3. I started noticing my trunk being really tight. I have been healthy my whole like. Now spasms are bad. I progressed fast. Sounds like it hit you out of nowhere too
Iv been suffering from SPS for over 35years I would like to ask you did you ever physically fall and land on your buttocks ? I started suffering from It after an attack from an army drill sergeant in 1988 along with 4 other soldiers at fort dix NJ.
I had an injury to my left buttocks (piriformis), and shortly after started experiencing random, extremely painful, debilitating SPS type muscle spasms in my legs and feet. In addition to increasing overall stiffness, the spasms have progressively moved upwards into my thighs and hips and are lasting longer. I've been trying to track the cause down for about 3yrs now. Did yours start with the injury you describe?
No mine did not start from any particular injury. I began to have symptoms just in my everyday life. Unfortunately because stiff persons is so rare it’s important to find a doctor who can test for it correctly.
You are thinking that is the cause for you ? Good question to ask and understand the Why part maybe dr's have not asked all their patients. Very wise of you, My friend has this but he went through cancer treatment for bone cancer to save his leg and they used immunotherapy ( new ) it damaged him alot and then he got this, I think the Covid Vaccine might bring this on or make it worse as it has been doing strange things to people also. All the best to you
I’m starting to believe more and more that I have stiff person syndrome. After listening to you I believe it even more. I’ve been to so many specialists with no answers. My primary care doc definitely believes that my problems are neurological and is sending me to a better neurologist at UW medical center. Hopefully I will get answers.
I’ll cross my fingers for you and keep you in my thoughts
I was fortunate enough that someone ordered a neurology panel my 3rd trip to the ER. Initial diagnosis was dystonia, but there was clearly a huge number indicating GAD antibodies. Only other number was a 1 for hypothyroidism.
Prayers to you.
So many similarities and the variety of problems are in the hundreds. I could see your right leg in spasms. My symptoms started in the trunk muscles as I can remember from toddler on up but with thalidomide birth defects I never knew why till years after it hit me hard. Like you I got stiffer in the trunk muscles and had painful trouble with bike seats and motorcycle seats which if were narrow enough I fared better. A few years of really bad seating problems and stiffer trunk muscles plus completely the legs when bending or kneeling which became unbearable in seconds when I was hit really hard and I started falling, walking so slow with deliberate tiny steps. I struggled to keep working about another 14 months then it hit my arms bad which I was using to help my legs. That was it! When my doctors watched all my muscles constantly moving they said I'm done working and going on SSD. It's been badly down hill since with now the total horrible distorting limbs spasms concentrating on my obviously deformed side.
Holy moly. I’m not sure what to say except for that I can emphasize with your frustrations.
Thanks for posting your journey. Have been looking for others who explained their symptoms. I was diagnosed in 2018 after about a month of stiff legs and also ended up going to Johns Hopkins last November. I'm being treated by VA and am going to have to confront my doctor, who wants to change meds out of concern for memory loss. I want to keep function as long as possible. Will pray for you and your family.
And thank you following my journey. Prayers to you and your family as well
Yoga gently done helps me the best. I’m so sorry about you loosing your site. Xoxo friends SPS sister
You are brave and such an encouragement! Wow! Youre wonderful
Is loss of words part of SPS? Im starting this journey and trying to figure out what is wrong with me. Its way more than just loss of words but watching you reminds me of what i go through. Thank you for sharing your journey
I am very similar symptom wise and and also in the upstate NY area , I'd love to compare symptoms and possibly have someone to relate to , I feel for you ! Hope your having a good day ❤️
What part of upstate ny? And who diagnosed you?
Happy Birthday!!!!!!!!! 🎂🎂🎂💝🎁 Thank you for sharing your life , thank you all you do for helping people!!!❤️❤️❤️❤️ Love from FL!!!
Thank you! You've helped me out so much! More than you know!
with Celine Dion having it there will be a worldwide awareness about this disease and I'm sure CD will give a big donation for research .
😂😂😂😂😂😂
Thanks for sharing and all the best to you going forward. XOXOX
I was diagnosed in '97. Very good luck with your journey,
How you doing ?
Sorry, I've only just seen this, I'm OK thanks, but how are you doing?@@haninshuaib7289
@@haninshuaib7289 I'm OK thanks. How do you manage life when you're blind?
Good thanks.
@@haninshuaib7289
My rib muscles are spasming now… has that happened to you? What did you do to break it? I had to stretch and rub each one out. Peace & Love
Thank you for your openness. It does help and is appreciated. What is your Facebook page? It’s helpful to learn from others who have been doing this longer than me. 💜
Thinking and watching this, sending and HOPING PRAYING you and your family are doing better🫂🫂❤️🩹❤️🩹🫶 heart wrenching....yes, the recumbent bike is what I am doing, ....hang in there,🩰🩰🩰❤❤
Hi. I’m a mama of 3. I started noticing my trunk being really tight. I have been healthy my whole like. Now spasms are bad. I progressed fast. Sounds like it hit you out of nowhere too
I’m sorry to hear that but thanks for the comment. Have you gotten tested for this disease yet?
Good advice, hun!
❤️
Iv been suffering from SPS for over 35years I would like to ask you did you ever physically fall and land on your buttocks ? I started suffering from It after an attack from an army drill sergeant in 1988 along with 4 other soldiers at fort dix NJ.
Yes I’ve done so three times but all them were pre diagnosis
I had an injury to my left buttocks (piriformis), and shortly after started experiencing random, extremely painful, debilitating SPS type muscle spasms in my legs and feet. In addition to increasing overall stiffness, the spasms have progressively moved upwards into my thighs and hips and are lasting longer. I've been trying to track the cause down for about 3yrs now. Did yours start with the injury you describe?
No mine did not start from any particular injury. I began to have symptoms just in my everyday life. Unfortunately because stiff persons is so rare it’s important to find a doctor who can test for it correctly.
You are thinking that is the cause for you ? Good question to ask and understand the Why part maybe dr's have not asked all their patients. Very wise of you, My friend has this but he went through cancer treatment for bone cancer to save his leg and they used immunotherapy ( new ) it damaged him alot and then he got this, I think the Covid Vaccine might bring this on or make it worse as it has been doing strange things to people also. All the best to you
I wish your sound was better.
DONT FORGET TO GET YOUR BOOSTER!!! not
Geen covid spuiten! En zeker geen booster!!! Die verergeren het juist!!
No no no