Hi MS'ers I've got PPMS, I've had it for about four years or so. Most of the time, I feel like I've been hit by 358,932 Mack Trucks 24/7 365! I'm so glad that I'm retired, I can't imagine having to work while struggling with this crap! Everybody hang in there---WE WILL WIN!!!!!
2012 started my journey. I also thought I had MS. I think my mom gave it to me. And I think I gave it to 2 of 3 of my boys. My youngest has the hyper mobility. I always had the tight muscles like you. I think I’m starting to have colon issues.
I have Hypermobile EDS and for years i thought and the drs thought i had MS. The damage to my spine is shocking and i have severe nerve damage and daily numbness in most parts of my body. I am very Hypermobile still at 40 years old but now i have osteoarthritis in all my big joints. It also affects my jaw,teeth,hair and stomach. I have found the symptoms of EDS and MS can be very similar in some areas.
I’m in a very similar situation with nerve damage. Its shocking and I present like a stroke patient a lot (ive had joint reconstruction on major joints on only one side of my body). Waiting to get cleared for ms
How interesting I have been watching your videos as I possibly have ms. I have brain lesions but no spine lesions. And I have walking issues and my leg muscles always hurt so much without reason I go for walks and my lower legs swell activity increases swelling. My legs get weaker as the day goes on I have the little cyst like bumps on my wrists and heels etc. I wonder if it might not be me at all now. I have also been on high blood pressure meds and meds to lower my heart rate for a couple years now. Really got me thinking
Can you clarify what your connective tissue feels like? I have no diagnosis but I still believe it is PPMS. My tendons are super tight and very sore all over my body. They are so tight they feel like stretched rubber bands when I massage them. At times the tendons in my left leg are so tight if I try to walk all the muscles start to spasm in my leg. And when I say all, I mean ALL! Is it the opposite for you? Have you noticed any changes in your tendons? By the way, I’ve tested negative for all connective tissue disorders according to my neurologist. He did mention EDS at my last visit but disregarded it because I’m not hyper mobile.
I ended up diagnosed with Ehlers Danlos, tendinitis head to toe in multiple joints that became chronic. I still struggle with it. And yes, my EDS started with your symptoms. 5 years with symptoms and since it’s hereditary, multiple family members were diagnosed around the same time. If you want to know more visit the international Ehlers Danlos Society website.
Please share a follow up video. I'm going through this journey just now and your videos are very affirming!❤
I was diagnosed with PPMS in 2009 I am mostly in my hospital bed at home now but.. I am still hopeful at 64 years of age ❤️ Good Luck to u
Hi MS'ers I've got PPMS, I've had it for about four years or so. Most of the time, I feel like I've been hit by 358,932 Mack Trucks 24/7 365! I'm so glad that I'm retired, I can't imagine having to work while struggling with this crap! Everybody hang in there---WE WILL WIN!!!!!
how do you deal with income and having kids?
2012 started my journey. I also thought I had MS. I think my mom gave it to me. And I think I gave it to 2 of 3 of my boys. My youngest has the hyper mobility. I always had the tight muscles like you. I think I’m starting to have colon issues.
You are amazing. You're just like, so brave. I hope everything goes well for you. Good luck. You're in my prayers. Xx
No update? :(
Do you know her insta?
I have Hypermobile EDS and for years i thought and the drs thought i had MS. The damage to my spine is shocking and i have severe nerve damage and daily numbness in most parts of my body. I am very Hypermobile still at 40 years old but now i have osteoarthritis in all my big joints. It also affects my jaw,teeth,hair and stomach. I have found the symptoms of EDS and MS can be very similar in some areas.
I’m in a very similar situation with nerve damage. Its shocking and I present like a stroke patient a lot (ive had joint reconstruction on major joints on only one side of my body). Waiting to get cleared for ms
@@Tjnola have you ever had sudden inability to walk after being fine the day before? or had lesions ?
Thanks for your informative videos!
Non-Restorative Sleep is the term i thnk i've seen in publications and literature for MS and what not.
No updates?! 😢😢😢
Yes..there is no update..she should update her stetus and stay connected with us..what do you say?
How interesting I have been watching your videos as I possibly have ms. I have brain lesions but no spine lesions. And I have walking issues and my leg muscles always hurt so much without reason I go for walks and my lower legs swell activity increases swelling. My legs get weaker as the day goes on I have the little cyst like bumps on my wrists and heels etc. I wonder if it might not be me at all now. I have also been on high blood pressure meds and meds to lower my heart rate for a couple years now. Really got me thinking
what's the conclusion? Was EDS confirmed to be the cause of your symptoms? I really wanna know how are you nowadays
@@HonorableHarbingerthe fuck is wrong with you? Why would you say or even think that?
🧡
Did you ever get an evoked potentials test? Mine was abnormal
Nope had all the usual struggles in getting tested, and couldn’t get it approved
Can you clarify what your connective tissue feels like? I have no diagnosis but I still believe it is PPMS. My tendons are super tight and very sore all over my body. They are so tight they feel like stretched rubber bands when I massage them. At times the tendons in my left leg are so tight if I try to walk all the muscles start to spasm in my leg. And when I say all, I mean ALL! Is it the opposite for you? Have you noticed any changes in your tendons? By the way, I’ve tested negative for all connective tissue disorders according to my neurologist. He did mention EDS at my last visit but disregarded it because I’m not hyper mobile.
I ended up diagnosed with Ehlers Danlos, tendinitis head to toe in multiple joints that became chronic. I still struggle with it. And yes, my EDS started with your symptoms. 5 years with symptoms and since it’s hereditary, multiple family members were diagnosed around the same time. If you want to know more visit the international Ehlers Danlos Society website.
Hello. Have you ever tried Cusack Protocol?
No but I’ll look into it. What is it and has it worked for you?
any updates?
Yes and I believe I’ll have time this week to do a video. It’s been a while!
@@sherinahagen4619 let's hear back on how ur doing. you are so eloquent it's great to hear you talk on your issues