I have been misdiagnosed 3 years long... "You have sciatica he said" but why my leg is numb... Why it hurt... Why the numbness go up??? Battle like hell until a physiologist do some test on me (and clearly see huge clonus ) and tell me with this kingld of serious face " you should do a mri..." And then... The neurologist drop the bomb... Now my right side is almost completely numb... Maybe, if the first GP haven't gas lighted me, I wouldn't be a ambulatory wheelchair user now, bond to my two crutches...
I have huge clonus too. Was misdiagnosed for years, now fighting to get another mri .now I'm in wheelchair have spasticity, clnus head to toe,severe uhthoffs phenomenon( hugest red flag) I lose my voice, balance ,drag foot ,,numb fatigue like narcalepsy sone days cognitively slow completely like I'm sedated until temp comes right. I was misdiagnosed a few times but worse was conversion disorder because I stopped walking,collapsed in ER after drunk sideways walking for days prior and talking suddenly ..they did zero xrays ,zero throat checks ,no nerve conduction tests etc..the balance has put all my leg joints out now. I have prism glasses for double vision ,and on it goes.
Thanks for sharing your amazing story. Stress was a huge factor in me developing MS, I'm certain!. I had crippling severe anxiety for years and once I started to get MS symptoms the anxiety strangely diminished, almost like the anxiety turned into this autoimmune condition I have today. It sounds like a 'way out there' theory but because we don't know the cause, you never know 🤷🏻
I completely agree! I believe that stress, depression, anxiety, worry... If we don't talk and we push them down and keep them to ourselves, it pushes it down on to our immune system. Our immune system thinks, well that should be there... ATTACK!!! and hey presto. I think it definitely has something to do with it for sure.
I get the ms hug and said to the Dr it feels like I'm wearing braces but there to tight over my shoulders, and then the band around my heart area was terrifying I thought I was dying. It's not good🙏😞👍
I think it’s great what you are doing. It’s not only helping you work trough your feelings and navigating your MS journey but sharing it with the world is helping so many others too. I find it very comforting to watch. Sending you and your family all the love 🧡
Hi! Some of my diagnoses mimic MS and Parkinson’s. Waiting to see a neurologist for another round of seeing if I also have MS. I really appreciate how you talk about your journey and how MS doesn’t define you, you have it, but isn’t your identity. This is key to living with chronic illnesses, cancers, etc…. Having a positive attitude is huge. Finding people who support and encourage makes a world of a difference. My faith in God is what has got me through. You have a great channel to listen to~ hope that it continues to grow and reach out to folks😘 thank you for sharing and being so vulnerable.
Thank you, what a lovely comment. I really appreciate it, thank you! 🙌 I hope you find the answers you needs, stay strong and keep going. You are absolutely right, staying positive is so important. I truly believe that negative thoughts, stress and worry, they create a breading ground for auto immune diseases. Stay positive and we can call conquer whatever you have or we have, and we can do it together. I hit a low point this year and was really struggling. I went out into the woods, feeling worthless and sat on my own and cried. It was then that god spoke to me and sheltered me. He has shown me he has a plan for me, and that my life, my MS, its all has a purpose. So I am still here and will continue to do what I can to help people. God bless you 🧡 Thanks for being a part of our gang. 🧡
I got diagnosed in 2022 at age 22, I'm excited to see people trying to educate anyone wanting to know more about MS, is incredible that this disease is still so unheard of by so many people I got misdiagnosed with something because of my ethnicity I was profiled and thanks to treatment I did not need I ended up with avascular necrosis 2 years later on top of my ms. I been of starting my own channel but would not know where to start.
Hi im Amanda this is such a remarkable story, I recently got diagnosed with RRMS in April of this year but I had been having signs and symptoms for 4 years, it really sucked, I'm just glad I'm not in the dark as to what is going on. Sending everyone positive vibes 💚
Hi Amanda! Sorry to hear of your diagnosis 🙏🏻 you’re not alone, we’re all here with you 👊🏻 It’s weird isn’t it? The diagnosis can come as a bit of a relief, it’s comforting to know we’re not making it all up, that something IS wrong, but now we know what it is. You’ve got this 👊🏻 and we’ve all got your back 🧡
I hope you fine bro, have it since 19 im 27. I just got a wake up call and your the first one i saw. Im not watching the whole Video. But i wanted to say stay strong and focused🤙
Going through the diagnosis now. I have Lharametes syndrome however it's spelled LOL. But yes, I get the wobbles with hot showers, lose feeling in fingers, and eye sight. Had multiple MRIs not an MS specialist. So difficult 😢 yes lessions on my MRI imaging.
I was diagnosed with RRMS in 2015 and progressed to SPMS in 2021, as my issues and condition got worse with worsening mobility and many, many issues I experience both every day & every night. I’ve lost 95% of my independence and annoyed with myself, as I want to do what I did 9 years ago prior to diagnosis 😢.
I'm so sorry to hear that, honestly that's awful and it's not right! I hope you're ok. Hopefully time make things a little easier, but we are all in this together and here to support you. 🧡
Oh no! 😑 Awful isn't it? The the doctors can't be a little more compassionate with such life changes news. I think it further goes to show the lack of understanding of what MS does to us all 🤔 Hope you're well...
Hi Guys. Going down the rabbit hole now, had an MRI and images showed clear however on top of the numbess over various parts of my body, I also have this feeling of having a fever but without the raise tepearature, stuffy nose 24/7 and feeling like i have some inflammation in my sinuses even though nothing actualy hurts and feeling slighlty sick allways. Anyone else with MS experienced soething like this?
Hi, I am not diagnosed as my original primary Dr basically refused to entertain anything I ever complained about as anything other than anxiety. I have tried every depression or anxiety medication he recommended for either with. results in mood changes but zero changes in the symptoms I complained of. I am fairly convinced I have had some kind of neurological disease, most likely MS, but getting anyone to take me seriously after my Dr stamped anxiety on everything with my name on it has proven very difficult. Having said all that, I too wild temperature swings, mostly being feeling very hot, especially in my face. And having a stuffy nose with no cold or cause. And I very often get episodes that feel like I have the flu for an hour or two, just horribly sick, then it kindve fades for a while.
I got diagnosed with trigeminal neuralgia a few years ago. I also have addison's disease. I haven't seen a neurologist in 2 years =/ but they said i may have ms?? I feel like my body shuts down..
Oh boy, we've just finished summer in the Southern Hemisphere. It was the worst ever. Everything health-wise just blew right up. Could hardly do anything at all. Horrible.
Thats what I have that my mother gave me...She had Primary Progressive MS , and my diagnosis is relapsing remitting MS, this is the first time i have seen this channel and i subscribed now!! Mine is in my left brain....the heat kills me!! Did you know that Jack Osborne, the son of Ozzy Osborne has MS and so does Christina Applegate...they bleed the same blood and breath the same air... I have been on steroids and I just LOVE steroids!!! Yes they are bad to use and I only use them as needed...I've been on Solumedrol and that is only in a sudden severe episode, and I have used Avonex for a little while, but I wasnt fond of the shots.....I was 17 walking to school and felt drunk, I didnt tell my parents...I waited until I was on my own, I didnt want to stress my dad even more...My mom died from it in 2001.....OH, if YOU have it SO WILL YOUR KIDS !!
Thanks for sharing your story. Many of us have similarities with our MS stories. I would love to be a guest on the podcast. Let me know if you’d like to connect.
Really sorry to hear 😔 With respect , that music is disruptive, annoying & distracting concentration for us on your speech 🤷♀️ Ty ☮️ Please delete the background regurgitating banging ☺️ Please tell us exactly which / all the tests you had to diagnose your ms ?! 🤔 🤗
Sorry the music is so distracting... 😑 Been trying to make the videos fun and upbeat, but you're not the first person to mention the music. I will bare it in mind for future videos and see if I can make it all a little more relaxed. Sorry again, and thanks for thew feedback.
@@livingwithms ty for your response & understanding Liam 😊 Sorry , but as I said, from our end it’s really disturbing, banging & distracting dear 🤷♀️ Your wonderful & upbeat without the back up music 👏 🙌 Not needed imo 💁♀️ You have a great personality ☺️ Take care , stay strong , blessings 🙏 💜 🤗
You're such a delightful person and a dedicated doctor, you are truly an inspiration Dr Emovon on UA-cam, I'm finally free from bad breath and acid reflux stay blessed sir.💐😝😝🎁💐💐😅
I was told my MRI was not normal and I had inflammation in Brain and Spine. I didn't know what that meant. Then he said what did you think was wrong? And I said well I was worried I had MS and he was like ummm yeah it is MS🫠🫠🫠
Wow. What a horrible way to inform somebody of something so life changing. Honestly, I am hering more and more stories of how blunt and horrible neurologists are at delivering the news. A bit of compassion would go along way! Hope you are well. Thank you for being here with us 🧡
His life is not much shorter, what a horrible thing to say to someone, on average us with ms have maybe an average of a couple of years less than someone without ms..how well people can be mobil is different for everyone ..how horrible of you to cause more anxiety and worry, get educated and stop being a horrible human being.
@justinwebb3117 , what are you talking about??? I go to barrows neurological institute, one of the top 5 neurologist centers in the United states of America, maybe in your 3rd world country the doctors tell you that your going to die soon, but ummmm no, you are so uneducated and vile that you spread false anxiety and information...what is wrong with people, my god even a 5 second Google search will tell you that a person with ms has maybe at most a 7 year less of life span than a healthy person..your ignorance is baffling...
![Multiple Sclerosis Diagnostic Criteria [Neurologist Explains]](http://i.ytimg.com/vi/Ixns85V95-Y/mqdefault.jpg)
I have been misdiagnosed 3 years long... "You have sciatica he said" but why my leg is numb... Why it hurt... Why the numbness go up??? Battle like hell until a physiologist do some test on me (and clearly see huge clonus ) and tell me with this kingld of serious face " you should do a mri..." And then... The neurologist drop the bomb... Now my right side is almost completely numb... Maybe, if the first GP haven't gas lighted me, I wouldn't be a ambulatory wheelchair user now, bond to my two crutches...
I have huge clonus too. Was misdiagnosed for years, now fighting to get another mri .now I'm in wheelchair have spasticity, clnus head to toe,severe uhthoffs phenomenon( hugest red flag) I lose my voice, balance ,drag foot ,,numb fatigue like narcalepsy sone days cognitively slow completely like I'm sedated until temp comes right. I was misdiagnosed a few times but worse was conversion disorder because I stopped walking,collapsed in ER after drunk sideways walking for days prior and talking suddenly ..they did zero xrays ,zero throat checks ,no nerve conduction tests etc..the balance has put all my leg joints out now. I have prism glasses for double vision ,and on it goes.
My entire adult life. You're just a depressed tired single mom
My life is ruined. I can't care for my kids. No one to help. I'm fkn over it
Thanks for sharing your amazing story. Stress was a huge factor in me developing MS, I'm certain!. I had crippling severe anxiety for years and once I started to get MS symptoms the anxiety strangely diminished, almost like the anxiety turned into this autoimmune condition I have today. It sounds like a 'way out there' theory but because we don't know the cause, you never know 🤷🏻
I completely agree! I believe that stress, depression, anxiety, worry... If we don't talk and we push them down and keep them to ourselves, it pushes it down on to our immune system. Our immune system thinks, well that should be there... ATTACK!!! and hey presto. I think it definitely has something to do with it for sure.
Yes. My mother's best friend had MS. She swore it was anxiety based, anxiety related to fear of not getting things right.
@@lmiller1413 what do you mean by 'fear of not getting things right'? I don't understand.
Keto and Poleo dıet works well...slso,avoıd gluten and daıry products please
I get the ms hug and said to the Dr it feels like I'm wearing braces but there to tight over my shoulders, and then the band around my heart area was terrifying I thought I was dying. It's not good🙏😞👍
I think it’s great what you are doing. It’s not only helping you work trough your feelings and navigating your MS journey but sharing it with the world is helping so many others too. I find it very comforting to watch. Sending you and your family all the love 🧡
Is MS inflammation of the central nervous system?
Hi! Some of my diagnoses mimic MS and Parkinson’s. Waiting to see a neurologist for another round of seeing if I also have MS.
I really appreciate how you talk about your journey and how MS doesn’t define you, you have it, but isn’t your identity. This is key to living with chronic illnesses, cancers, etc…. Having a positive attitude is huge. Finding people who support and encourage makes a world of a difference. My faith in God is what has got me through.
You have a great channel to listen to~ hope that it continues to grow and reach out to folks😘 thank you for sharing and being so vulnerable.
Thank you, what a lovely comment. I really appreciate it, thank you! 🙌 I hope you find the answers you needs, stay strong and keep going. You are absolutely right, staying positive is so important. I truly believe that negative thoughts, stress and worry, they create a breading ground for auto immune diseases. Stay positive and we can call conquer whatever you have or we have, and we can do it together.
I hit a low point this year and was really struggling. I went out into the woods, feeling worthless and sat on my own and cried. It was then that god spoke to me and sheltered me. He has shown me he has a plan for me, and that my life, my MS, its all has a purpose. So I am still here and will continue to do what I can to help people. God bless you 🧡
Thanks for being a part of our gang. 🧡
I got diagnosed in 2022 at age 22, I'm excited to see people trying to educate anyone wanting to know more about MS, is incredible that this disease is still so unheard of by so many people
I got misdiagnosed with something because of my ethnicity I was profiled and thanks to treatment I did not need I ended up with avascular necrosis 2 years later on top of my ms. I been of starting my own channel but would not know where to start.
I too was diagnosed with MS in 2015 and have been living with it. Yes, I agree acceptance was tough but now I have learnt how to live with it.
Hi im Amanda
this is such a remarkable story, I recently got diagnosed with RRMS in April of this year but I had been having signs and symptoms for 4 years, it really sucked, I'm just glad I'm not in the dark as to what is going on. Sending everyone positive vibes 💚
Hi Amanda! Sorry to hear of your diagnosis 🙏🏻 you’re not alone, we’re all here with you 👊🏻
It’s weird isn’t it? The diagnosis can come as a bit of a relief, it’s comforting to know we’re not making it all up, that something IS wrong, but now we know what it is.
You’ve got this 👊🏻 and we’ve all got your back 🧡
I hope you fine bro, have it since 19 im 27. I just got a wake up call and your the first one i saw. Im not watching the whole Video. But i wanted to say stay strong and focused🤙
Going through the diagnosis now. I have Lharametes syndrome however it's spelled LOL. But yes, I get the wobbles with hot showers, lose feeling in fingers, and eye sight. Had multiple MRIs not an MS specialist. So difficult 😢 yes lessions on my MRI imaging.
I was diagnosed with RRMS in 2015 and progressed to SPMS in 2021, as my issues and condition got worse with worsening mobility and many, many issues I experience both every day & every night. I’ve lost 95% of my independence and annoyed with myself, as I want to do what I did 9 years ago prior to diagnosis 😢.
Got diagnosed at 16 that was 2021 and the way I found out was worst then blunt im trying to understand but at times it gets hard
I'm so sorry to hear that, honestly that's awful and it's not right! I hope you're ok. Hopefully time make things a little easier, but we are all in this together and here to support you. 🧡
Thanks for sharing. Mine was just as blunt 😳🤯
Oh no! 😑 Awful isn't it? The the doctors can't be a little more compassionate with such life changes news. I think it further goes to show the lack of understanding of what MS does to us all 🤔 Hope you're well...
Hi Guys. Going down the rabbit hole now, had an MRI and images showed clear however on top of the numbess over various parts of my body, I also have this feeling of having a fever but without the raise tepearature, stuffy nose 24/7 and feeling like i have some inflammation in my sinuses even though nothing actualy hurts and feeling slighlty sick allways. Anyone else with MS experienced soething like this?
Hi, I am not diagnosed as my original primary Dr basically refused to entertain anything I ever complained about as anything other than anxiety. I have tried every depression or anxiety medication he recommended for either with. results in mood changes but zero changes in the symptoms I complained of. I am fairly convinced I have had some kind of neurological disease, most likely MS, but getting anyone to take me seriously after my Dr stamped anxiety on everything with my name on it has proven very difficult. Having said all that, I too wild temperature swings, mostly being feeling very hot, especially in my face. And having a stuffy nose with no cold or cause. And I very often get episodes that feel like I have the flu for an hour or two, just horribly sick, then it kindve fades for a while.
Thank you for sharing 😊 I’ve has rrms since 2008 I’m 35 now 😢the last 2years have been rough!
Hi have you considered any of the diets out there, dairy , gluten , sugar free etc? People are getting great results 😊
I got diagnosed with trigeminal neuralgia a few years ago. I also have addison's disease. I haven't seen a neurologist in 2 years =/ but they said i may have ms?? I feel like my body shuts down..
TN is horrible. I feel for you.
Thank you for sharing 😊
Heat brings on symptoms
Oh boy, we've just finished summer in the Southern Hemisphere. It was the worst ever. Everything health-wise just blew right up. Could hardly do anything at all. Horrible.
Thats what I have that my mother gave me...She had Primary Progressive MS , and my diagnosis is relapsing remitting MS, this is the first time i have seen this channel and i subscribed now!! Mine is in my left brain....the heat kills me!! Did you know that Jack Osborne, the son of Ozzy Osborne has MS and so does Christina Applegate...they bleed the same blood and breath the same air...
I have been on steroids and I just LOVE steroids!!! Yes they are bad to use and I only use them as needed...I've been on Solumedrol and that is only in a sudden severe episode, and I have used Avonex for a little while, but I wasnt fond of the shots.....I was 17 walking to school and felt drunk, I didnt tell my parents...I waited until I was on my own, I didnt want to stress my dad even more...My mom died from it in 2001.....OH, if YOU have it SO WILL YOUR KIDS !!
i want help but al these docs say the same thing " youre too young" idk if i have MS or NOT how do you get diagnosed ?
Usually by seeing a neurologist, having a blood test, MRI, and Some nerve conduction tests done
Thanks for sharing your story. Many of us have similarities with our MS stories. I would love to be a guest on the podcast. Let me know if you’d like to connect.
Hey! Yes!! That would be amazing. Drop me an email at liam@themsmindset.com
Really sorry to hear 😔
With respect , that music is disruptive, annoying & distracting concentration for us on your speech 🤷♀️
Ty ☮️
Please delete the background regurgitating banging ☺️
Please tell us exactly which / all the tests you had to diagnose your ms ?! 🤔
🤗
Sorry the music is so distracting... 😑 Been trying to make the videos fun and upbeat, but you're not the first person to mention the music. I will bare it in mind for future videos and see if I can make it all a little more relaxed.
Sorry again, and thanks for thew feedback.
@@livingwithms ty for your response & understanding Liam 😊
Sorry , but as I said, from our end it’s really disturbing, banging & distracting dear 🤷♀️
Your wonderful & upbeat without the back up music 👏 🙌
Not needed imo 💁♀️
You have a great personality ☺️
Take care , stay strong , blessings 🙏 💜
🤗
Im kinda in the middle. I have the symptoms but we just cannot nail it down. My grandpa lived til 89 with it. Only about 86 he started to be bed bound
I feel this.. I have so many symptoms but my Neurologist just won't say I have MS. I'm missing a lesson to be text book MS.
So do you take any drug now?
Yes! I started on Techfidira, then moved onto Cladribine. Now I start Ocrevus a week tomorrow 😱
@@livingwithms did cladribin work?
You're such a delightful person and a dedicated doctor, you are truly an inspiration Dr Emovon on UA-cam, I'm finally free from bad breath and acid reflux stay blessed sir.💐😝😝🎁💐💐😅
I was told my MRI was not normal and I had inflammation in Brain and Spine. I didn't know what that meant. Then he said what did you think was wrong? And I said well I was worried I had MS and he was like ummm yeah it is MS🫠🫠🫠
Wow. What a horrible way to inform somebody of something so life changing. Honestly, I am hering more and more stories of how blunt and horrible neurologists are at delivering the news. A bit of compassion would go along way!
Hope you are well. Thank you for being here with us 🧡
Having it now over 6 years, my advice do Wat you can on your bucket list & have No regrets as now ur life is Much shorter
His life is not much shorter, what a horrible thing to say to someone, on average us with ms have maybe an average of a couple of years less than someone without ms..how well people can be mobil is different for everyone ..how horrible of you to cause more anxiety and worry, get educated and stop being a horrible human being.
You are so wrong, who is your neurologist??! You need to speak to them about your length of life expectation with MS, you're in for a shock! 😂
@justinwebb3117 , what are you talking about??? I go to barrows neurological institute, one of the top 5 neurologist centers in the United states of America, maybe in your 3rd world country the doctors tell you that your going to die soon, but ummmm no, you are so uneducated and vile that you spread false anxiety and information...what is wrong with people, my god even a 5 second Google search will tell you that a person with ms has maybe at most a 7 year less of life span than a healthy person..your ignorance is baffling...