Thank you so much for putting your story on TH-cam I really needed this more than you think…… After so many ER and doctor visits I was told I have fibromyalgia but my Docter told she believes I have MS but I just never did an MRI… cause of money and honestly SCARED!! Never went back to update her…. I have the same numbness and head pain into my eye so numb it’s the only thing I can think about it drives you crazy!!! that you are describing and it the worse feeling I felt in my life the numbness goes into my head into my arm I could barely hold that arm up to shower! I thought I had a brain tumor I went to ER for CT they lit up my brain and said there is nothing told me it’s just a big migraine. Now I’m going back to my doctor to finally do my MRI…
I was just diagnosed with RR MS. Omg it’s insane to hear someone else go through the exact same thing. It’s a nightmare!!!! I believe stress causes symptoms to burst! I’m in Canada so it’s been 5 years waiting on a diagnosis. 22 years of weird things changing in my body. Thank you for sharing your story! I love your accent❤️ I m sorry you’ve been dealt with this journey! We gotta just keep going! I have 4 kids. One is disabled so I don’t have time to be in bed 3 weeks!! Also something as simple as a set of stairs can seem hopeless. Sending love and strength to everyone struggling with this fight!🌹
Thank you for such a lovely message 🥹🩷 sorry that you had to wait so long for a diagnosis, it’s so unfair. You seem like you have a positive and strong mindset. I hope treatment goes well for you. Sending you love 🩷💜
Hi Jessie, Thank you for sharing your story and making other people aware of symptoms that shouldn't be ignored. I also have RRMS I'm in my 11th year this month. I was diagnosed Jan 2013 with very similar symptoms to you. For me it was a year of testing because I was diagnosed in 2003 with a benign brain tumor followed by sensory epilepsy. Alot of my symptoms were just put down to the epilepsy. I finally was given an MRI and spinal tap and I was given my diagnosis of RRMS. I have had a rough 12 months and I'm waiting on my neurologist appt in March for my latest MRI results. I didn't get diagnosed until I was 52 yrs old so in that respect I consider my self lucky. I live in Australia and have fantastic support from MSWA and NDIS. They call RRMS a hidden disability,so most of the time we look normal to other people. It's great to get people to be aware of MS. I call myself an MS warrior and take each day as it comes. There are so many new medications and research into MS now. I had daily injections of Capaxone for the first 3 yrs and have been on Aubagio tablets since then. I wish you well on your journey and hopefully one day they will have a cure. Much love Christine ❤️
I was diagnosed on my 33rd birthday. January 25, 2022. Luckily, I had no headaches or nausea. I'm sorry you did. But I was very confused too and it took my mom taking me into the hospital. I was in there for 6 days. There I quit smoking cigs (it got to the point I would drag my right foot after smoking), stopped drinking soda, and started eat healthier. My double vision went away, I don't need a walker (though the neurologist told me I would probably be in a wheelchair in the next few years), my constant dizziness has gotten better but still have it. I can drive again luckily, but I have no idea how long that will last. My speech has been slurry lately and intense . I'm still on steroids and my face is swollen. I want to get on meds that I need. My bf of 9 years stopped being there. I feel alone. But thank you for sharing your story as hard as it is.
Wow Danell. I’m sorry to hear about what a hell of a time it’s been for you, but at the very least I’m glad to hear the lifestyle changes have shown in improvement regarding your symptoms. I have just been told by a rheumatologist after numerous symptoms including polyneuropathy and two low Complex Compliment blood tests that it’s looking very much like an autoimmune disease/s. Definitely painful and worrisome times, and I know how lonely it can feel in the experience such strange pain and symptoms. Sending my love to you wherever you are x
I am so sorry to hear what you're going through, it's such a scary experience! And I'm sorry that your b/f is no longer there for you. You are so brave for sharing your story and feelings and I am sending you so much strength and positivity 💖 it is so good that you gave up cigarettes and improved your lifestyle. That's half the battle and doing that alone will make such a difference for your physical and mental health. I hope you get medication soon, we all deserve access to good health care 💖💖
Having my second flare up since I was diagnosed almost 3 years ago, and it is still a hard pill to swallow. I went to therapy for it, but it gets to me at times like these. Thank you for spreading awareness, and sending positive vibes 🧡
I'm so sorry you're having another flare up 😔 are you on treatment? It's very difficult to accept. I'm coming up to one year since my 1st attack and it still feels so fresh! Sending you hope, strength and positivity my dear 💖💖💖
@@jessiebarry279 I'm probably going to go to the hospital for steroids soon. I was on Aubagio. But my health insurance provider at the time didn't want to pay for it, so I stopped taking it.
@@karalee4701 is there a different medication they'll pay for? This is so unfair, I'm just so sorry that this is happening. Steroids will definitely get you through this flare up quicker but not the long term solution 😔
To hear you describe those pins and needles..I thought, finally, someone gets it! I'm currently recovering from cervical transverse myelitis and the constant numbness and pins and needles that don't go away are horrendous (I've no words). I'm glad you shared your stories, it's reassuring knowing there's someone out there who knows how I feel. Stay strong!
Thank you for the comment. I'm so sorry to hear about the cervical transverse myelitis. I havent heard of it before. I agree, it's so reassuring knowing that someone knows the exact feeling of a symptom. It can be so difficult trying to explain it to someone who has never experienced it. I hope you recover soon, sending you strength 💛🧡
Hi. Thank you for sharing and I’m so sorry for what you went through. ❤ I was looking to see if you’ve updated since your diagnosis. I don’t see a video. How are you doing and any plans for a update video? All the best to you!
@@jessiebarry279 I first started getting MS symptoms in 2016 once day I woke up I had double vision and my right leg and hand were completely numb. After dealing with it for a little over a month just hoping it would go away, my boyfriend took me too the ER. I live in a small PA town and my bf is literally one of like 20 black people in the entire county. N we've been together 14 yrs now and obviously we've heard and put up with alot of racist crap. However, when he took me to the ER that day, and the doctor literally took one look at me and him, and the first thing it off his mouth was "well, what did u do to her?" I WAS LITERALLY NEVER MORE APPALLED IN MY LIFE! N because this doctor already had made up his mind on what happened n what was wrong with me, it cost 4000 dollars to hear ABSOLUTELY NOTHING besides that I obviously need a new bf! He has NEVER hit me in the 14 yrs we been together! So, I only just found out that I just likely have MS in the last few months when I lost my vision again and both my legs were numb up to my belly button! But I finally got health insurance and have seen a few doctors n now have an MRI scheduled for next Saturday. I'm really really scared, but I really am just anxious n glad that something is finally gonna get done/, diagnosed n then hopefully learn how to manage my symptoms better!
You're Awesome! You're Brave! You're Beautiful..! Hang in there - thank you for sharing part of your journey. Remember you're not in this alone. Be strong - be well. ttyl
Hi, I’m awaiting an app for the spinal clinic I’ve already had 2 MRI scans, my Gp thinks I have MS because of other things I’ve had/got. You really explained a lot. Good luck with your treatment decision.
Thanks so much Louise. Im so sorry to hear that, best of luck with the spinal tap and results 💜 I'm glad my video was useful and I'll keep everyone updated with the treatment plan.
Best of luck with the MRI next week, I hope you get answers soon. It can be very frustrating and scary not knowing what is going on. Sending you strength and positivity 💖💖
I just got diagnosed with RRMS today 😞 I had my first experience end of august. It’s been VERY scary. I have been in and out of the hospital since then. I am going to get IV treatments next week the medicine starts with R something? I am from the states but I live in Sweden now. There is another medicine I may try that they are considering to be a “cure” in some years called Mavenclad. It’s very expensive but I don’t imagine it to be in some years to come. I am going into this with a positive mind but it is scary. I am thankful I stumbled across your channel as I feel so alone with this.
I know, it’s so scary experiencing attacks and even just getting a diagnosis. I hadn’t heard of Mavenclad, it’s great to hear of new treatments. I hope your IV goes well for you and things begin to improve 🫶🏻 and I’m glad my videos help you feel less alone 🩷💜
Well Jessie. Like urself I'm an Irish woman. How brave you are. My thoughts are with you, my dear. I have been through almost the same myself. But Ireland as you know urself, our Health System is a disgrace. Took over 10 yrs. To get my diagnosis. I was told, I had sooo many different things in between. But I would not give up, We all know our own bodies. I knew for sure it was not what the Dr's were diagnosing. POLY this, that n the other. So I went Private and finally had tests that had never been carried out before. I was not shocked when I heard the MS. I suspected it myself. We will cope with this dreadfully awful illness. Pgod new meds. come on the market, all the time. But for sure more research needs to be done, ASAP. I wish you the very best. Stay positive, eat well, every little thing helps. God bless you. Evelyn. 🇮🇪💚
I’m so sorry you had to wait so long for a diagnosis and that you had to go private in the end. The health care system in Ireland is so inconsistent. I hope you have a good treatment plan now. Yeah there’s always new treatments coming on the market and it’s great to see so much research goes into the disease. Thank you for the lovely message, sending you love and positivity 🩷💜
I have ms now for nearly seven years and believe me...it's stays a surprise.everyday is n mistery. When people tell me ..wow you look so good.then I tell them ya you must feel it from this side
You’re amazing, and can get through this. 💕 ..I had my first ‘episode’ in 2014, and the worst of it lasted 18 months. I couldn’t walk unassisted, couldn’t speak, couldn’t use my gross or fine motor skills, etc. I had to quit my full time job, but over time everything came back, but I’m super sensitive to light/colour/sound/texture/pattern etc, and depending on the day my writing is horrendous. Fast forward to 2019, aaaaaaand I have my second episode, which is absolutely no where near as bad as the first, but I get fired from my new job, and still don’t have a diagnosis. Fast forward to now, and I’m still having involuntary body movements, have regular speech problems, as well as other symptoms, but I’ve just been diagnosed with MS. (As well as IIH) Im almost 30, and have been having problems with my brain for basically my whole life, it’s nice to finally have an answer, even if it is a crap one. You should look up ‘Terry Wahls’ if you haven’t, it’s probably not an answer for you, but it might help! Stay strong, you’ve got this! 💕
Hi Rachel, I am so sorry to hear your story. It sounds terrifying and I cant even imagine what an 18 month relapse is like. And I'm so sorry that you had to go so long without a diagnosis. It's so unfair. You're incredible for sharing your story and it's great to hear you have a diagnosis (even if it's a shit one). I hope you have access to treatment and it's going well for you. Thank you for your recommendation of Terry Wahls, I hadn't heard of her before. Stay safe 💖💖
I am watching your channel as I lay here receiving steroids and not feeling well during a relapse. I totally get the emotion you show when describing it all. Thank you for sharing your story.
This video has given me so much validation, i have had similar attacks to you, i thought i was dying, in the end they diagnosed me with menieres disease but ive been getting lots of new symptoms and now they think ive been wrongly disagnosed. Ive experianced pretty much everything you have and im going back for another mri soon. Totally sympathise with everything youve been through.
Omg it’s so unfair the amount of people that are wrongly diagnosed. Those attacks are so terrifying so I totally get what you’re saying. I hope you get answers soon and get a treatment that suits you. Sending you so much love 🩷💜
Thanks for sharing Jessie, I was diagnosed just before Christmas myself. I'm still working out what sets of my symptoms between the relapes, its certainly a journey of discovery.
Thanks for sharing your story Jessie. Sorry you have to go through this but it obviously has not dampened your incredible spirit. You are an amazing person.
Thanks for sharing your story. It’s extremely frightening to experience these types of symptoms and not know what’s going on. I don’t know if I have MS but I have an MRI next week to find out. Not knowing is what makes it so scary. I also just don’t know what is worth mentioning to doctors and what isn’t. I had a week of very scary symptoms balance issues, intense brain fog and confusion, numbness in my arms legs and face. But your story reminded me that I had an experience somewhat similar to yours one night where I was very sick all night vomiting and it got worse whenever I moved it felt like I could barely hold my head up. It was very hard to fall asleep and the nausea would wake me up. I thought it might be food poisoning but now Im second guessing it. I’m sorry that you experienced what you did, especially how you were treated in the hospital while going through it. UPDATE: I had another visit to the ER a few months ago and turns out I had pancreatitis. I’m not sure that the symptoms I had experienced were related to that but that’s where I’m at now.
@@Doodootrain Thanks for checking up on me! What’s crazy is all the scans and blood work came back fine. No lesions so they ruled out MS. What’s even CRAZIER is that I just got back from the ER after having a major speech impairment and twitching/numbness on the left side of my face and body. A second round of scans and tests evidently everything came back fine. The only thing abnormal was my blood pressure being high. They keep telling me stress or possibly TIA. I have a follow up appointment soon, but no answers still. I appreciate your concern!
Well done Jessie 🙌🏼💜 very proud of you sharing your story and separately thanks for all the information on MS. I think a lot of people hear about it but don’t actually know the ins and outs of it. Keep at it 💪🏻💜xxx
What a birthday present. Actually I was happy as hell when I finally had an answer. Soooo happy. Then I found out all about DMT’s and that went away so. Dx at 45 on 12/15/22 Still haven’t started treatment. My legs hurt. Fun times
I had that dizziness and numb face and tounge for six weeks , it's unbearable I know exactly how you feel xx couldn't walk etc ,so horrible and scary xx
Your shingles story reminds me of my visit to the oncologist.He said, It's not leukemia and I felt relieved and sick. I thought, at least if I can name it, maybe I can fight it. I am a year in and have had 3 episodes where the vomiting and vertigo lasted a month each time and i am still waiting for a diagnosis. My best to you in your fight.
@@maletero9888 I can't believe you haven't got a diagnosis yet. That's so tough. You're right, getting a label on it definitely means you can work towards treating it. I'm so sorry that you have to suffer with these episodes. I really hope things begin to change so you can move forward with your life. Sending you positivity and strength 💪🏼💜
@@jessiebarry279 Texas... :( Let em die, we can breed more is our unofficial motto :/ I took some time to write up my journey so far. on the "10 most unusual symptoms of MS" he has ever seen, page linked below. I had 2 of them. Cog fog and intractable vomiting. The rarity of THOSE symptoms that I have, kind of gave me the Idea I'm on the right trail. More than that, when the Doc said where he found his patients flair, I broke out my cd copy of my MRI and checked. Right there in the medulla oblongata, a small grub worm C shaped spot, hugging a vein and another nearby. :o I feel kind of stupid rooting FOR MS but I can't tell you how relieved I was to hear my oncologist say "Not Leukemia. Best th-cam.com/video/HBEk7Vd9di4/w-d-xo.htmlnld
I firmly believe it must somehow be related to food, metabolism, and cytokines. Most likely something is binding to the myelin sheath the immune system is trying to remove and in doing so it attacks the myelin in the process. It has also been pointed out that almost no one near the equator gets MS. So sunlight and vitamin D are implicated.
That is an informative video I do hope that you can receive all of the helpful medications that won't have you dealing with such issue that this Multiple sclerosis sickness has done to you I also hope you recover it too I also have this Multiple Sclerosis sickness just as you said it just started out of nowhere but nobody wants to to believe me at all I was told I was just making it up and that I was just joking I don't joke around I gain nothing from it but at least I know they can't be trusted at all so they can think that I made up this Multiple Sclerosis sickness out of the blue and I can have some superpower that just makes this out of nothing and that's me being honest too .but I do hope the best for you
Thank you so much, I’m doing so much better now that I’m on a really good treatment. Sorry to hear people didn’t believe you. It happens to much to people when they are sick and it’s honestly so horrible. I hope you’re doing okay and that you have a good support system around you. Sending you love and strength 🩷💜
I have cerebral palsy and 2as recently diagnosed with polyneuropathy so I can relate the polyneuropathy keeps getting worse as time passes between appointments how fast its spreading the neurologist said was uncommon it started in April and by fall it was everywhere and it's sensory and autonomic
My heart goes out to you, that sounds so scary. I hope there is a treatment out there for you to help with symptoms and stop the spread. Thank you for sharing your story, sending you so much strength and hope 💖💜💖
Thank you for sharing your story, Jessie. That all sounds very frightening! I was wondering if you've seen the Code Blue documentary, and if so, what did you think of it?
I am having similar symptoms. In hospital they’ve also made me walk and gave me anti-vertigo tablets and told me to go home. I am getting a neurologist privately, hopefully I will get some answers.
Any lifestyle choices that have helped you out? Just been diagnosed the start of this year and back to feeling normal after my attack but worried about the next one
Honestly the biggest thing I’ve changed for lifestyle is getting really good sleep. Every night I get around 8 hours. I try eat a really balanced diet too. I defo should exercise more but I’m working on that. Hope you’re doing okay 🩷💜
I have ms diagnosed Jan 2021 ocrevus is what they want to put me on YOGA STRETCHING EXERCISE VITAMIN D MEDITATION it may not be a cure but all those help the brain were in this together 🧡
Just want to let you know my neurologist told me Ocrevus is associated with a 1% increase in breast cancer. He said Kesimpta is a better somewhat similar drug.
@@Truerealism747 it stopped I am doing great now..I had a lot of mixed up symptoms. My muscles felt light on one side of body because i read about MS too much and my brain was tricking me, I had carpal tunnel symptoms too, i felt some heat waves somewhere under my thumb and forefinger like something was burning my skin, I was depressed, nervous, scared, my muscles were twitching here and there on several places of my body, shortness of breath and chest ache, aches on my upper legs mainly my calves... But didn't fell not even once, nor was dropping things etc. But I still thought I have MS. On extreme occasions I thought of ALS as well. GAD symptoms are the worse you can get its like a loophole, you feel stuck the more you think or read about your fears.
Your episodes sound frightening. My younger brother has MS and was basically ok until his disease developed into Secondary Progressive. Then recently my daughter in law has experiences several boughts of vertigo, tingling, facial numbness and body spasms. Was taken to hospital several times this year. They say her symptoms are atypical. She finally had an MRI that showed several lesions but they will not diagnose MS until she has more episodes. She’s 37. She will be followed up annually for now. But they won’t give her a lumbar puncture. We’ll see how things go.
I am so sorry to hear about your brother and what your daughter in law is experiencing. I'm so confused as to why they won't do a lumbar puncture when she has lesions. This must be so tough and frustrating for her and everyone around her. Sending you all so much hope and strength. I hope yous get some answers soon. Thanks for reaching out 🧡🧡
Just as an FYI, the blood brain barrier wrongly allows the immune cells into the central nervous system and they then attack the mylen sheath (coating) of individual nerves, depriving the nerves of their insulation in spots. This causes a delay or a disconnection of the nerves to what they are connected to.
Wow, i just finished listening to the rest of your story. OMG, you had a frightening go and the system took so long to treat you. Thank you for telling your story, I'm sure it was difficult to relive. I hope you are well.
I am not an expert, but I have found out that since I have become a vegan my body has felt a lot better. My advice would be to eat as a natural Lee and drink as naturally as you can. Avoid processed foods.
To be honest, I'm not sure if I have come to terms with it fully. When I have no symptoms and I have energy, usually I'm in good form as I feel like I have my normal life back. But there's days when I just feel low about the whole situation. I still think about it every single day so it definitely occupies my mind. But I try to enjoy the days when I feel strong and try not to be too hard on myself when I feel low. I'm due to get my MRI results in a few days so it could change everything and how I cop with the situation. Sorry to hear of your diagnosis, it's not easy to accept. Sending you all the strength and positivity 💖💖💖
I first started getting MS symptoms in 2016 once day I woke up I had double vision and my right leg and hand were completely numb. After dealing with it for a little over a month just hoping it would go away, my boyfriend took me too the ER. I live in a small PA town and my bf is literally one of like 20 black people in the entire county. N we've been together 14 yrs now and obviously we've heard and put up with alot of racist crap. However, when he took me to the ER that day, and the doctor literally took one look at me and him, and the first thing it off his mouth was "well, what did u do to her?" I WAS LITERALLY NEVER MORE APPALLED IN MY LIFE! N because this doctor already had made up his mind on what happened n what was wrong with me, it cost 4000 dollars to hear ABSOLUTELY NOTHING besides that I obviously need a new bf! He has NEVER hit me in the 14 yrs we been together! So, I only just found out that I just likely have MS in the last few months when I lost my vision again and both my legs were numb up to my belly button! But I finally got health insurance and have seen a few doctors n now have an MRI scheduled for next Saturday. I'm really really scared, but I really am just anxious n glad that something is finally gonna get done/, diagnosed n then hopefully learn how to manage my symptoms better!
I’m so so sorry you experienced such racism. What an awful thing to say to someone. I’m also sad to hear how long you’ve waiting to get some answers. Obviously it’s a tough diagnosis to receive but I hope you get your treatment soon and begin to get back on track. Sending you love and positivity ✨🫶🏻
Having new lesions to that extent in such a short period of time seems suspicious.. looks like they missed them 1st time around and are covering their asses
Thank you so much for putting your story on TH-cam I really needed this more than you think……
After so many ER and doctor visits I was told I have fibromyalgia but my Docter told she believes I have MS but I just never did an MRI… cause of money and honestly SCARED!!
Never went back to update her….
I have the same numbness and head pain into my eye so numb it’s the only thing I can think about it drives you crazy!!! that you are describing and it the worse feeling I felt in my life the numbness goes into my head into my arm I could barely hold that arm up to shower!
I thought I had a brain tumor I went to ER for CT they lit up my brain and said there is nothing told me it’s just a big migraine.
Now I’m going back to my doctor to finally do my MRI…
I was just diagnosed with RR MS. Omg it’s insane to hear someone else go through the exact same thing. It’s a nightmare!!!! I believe stress causes symptoms to burst! I’m in Canada so it’s been 5 years waiting on a diagnosis. 22 years of weird things changing in my body. Thank you for sharing your story! I love your accent❤️ I m sorry you’ve been dealt with this journey! We gotta just keep going! I have 4 kids. One is disabled so I don’t have time to be in bed 3 weeks!! Also something as simple as a set of stairs can seem hopeless. Sending love and strength to everyone struggling with this fight!🌹
Thank you for such a lovely message 🥹🩷 sorry that you had to wait so long for a diagnosis, it’s so unfair. You seem like you have a positive and strong mindset. I hope treatment goes well for you. Sending you love 🩷💜
@@jessiebarry279 🌹🌹❤️❤️
Hi Jessie, Thank you for sharing your story and making other people aware of symptoms that shouldn't be ignored. I also have RRMS I'm in my 11th year this month. I was diagnosed Jan 2013 with very similar symptoms to you. For me it was a year of testing because I was diagnosed in 2003 with a benign brain tumor followed by sensory epilepsy. Alot of my symptoms were just put down to the epilepsy. I finally was given an MRI and spinal tap and I was given my diagnosis of RRMS. I have had a rough 12 months and I'm waiting on my neurologist appt in March for my latest MRI results. I didn't get diagnosed until I was 52 yrs old so in that respect I consider my self lucky. I live in Australia and have fantastic support from MSWA and NDIS. They call RRMS a hidden disability,so most of the time we look normal to other people. It's great to get people to be aware of MS. I call myself an MS warrior and take each day as it comes. There are so many new medications and research into MS now. I had daily injections of Capaxone for the first 3 yrs and have been on Aubagio tablets since then. I wish you well on your journey and hopefully one day they will have a cure. Much love Christine ❤️
I was diagnosed on my 33rd birthday. January 25, 2022. Luckily, I had no headaches or nausea. I'm sorry you did. But I was very confused too and it took my mom taking me into the hospital. I was in there for 6 days. There I quit smoking cigs (it got to the point I would drag my right foot after smoking), stopped drinking soda, and started eat healthier. My double vision went away, I don't need a walker (though the neurologist told me I would probably be in a wheelchair in the next few years), my constant dizziness has gotten better but still have it. I can drive again luckily, but I have no idea how long that will last. My speech has been slurry lately and intense . I'm still on steroids and my face is swollen. I want to get on meds that I need. My bf of 9 years stopped being there. I feel alone.
But thank you for sharing your story as hard as it is.
Wow Danell. I’m sorry to hear about what a hell of a time it’s been for you, but at the very least I’m glad to hear the lifestyle changes have shown in improvement regarding your symptoms. I have just been told by a rheumatologist after numerous symptoms including polyneuropathy and two low Complex Compliment blood tests that it’s looking very much like an autoimmune disease/s. Definitely painful and worrisome times, and I know how lonely it can feel in the experience such strange pain and symptoms. Sending my love to you wherever you are x
I am so sorry to hear what you're going through, it's such a scary experience! And I'm sorry that your b/f is no longer there for you. You are so brave for sharing your story and feelings and I am sending you so much strength and positivity 💖 it is so good that you gave up cigarettes and improved your lifestyle. That's half the battle and doing that alone will make such a difference for your physical and mental health. I hope you get medication soon, we all deserve access to good health care 💖💖
My left side used gets stiff after smoking too, looks like MS does not tolerate bad habits, had to quit too. I was just diagnosed this February myself
Thats heartbreaking! How old are you? I have MS but was fine until 42. I’m uploading my MS Story today
Having my second flare up since I was diagnosed almost 3 years ago, and it is still a hard pill to swallow. I went to therapy for it, but it gets to me at times like these. Thank you for spreading awareness, and sending positive vibes 🧡
I'm so sorry you're having another flare up 😔 are you on treatment? It's very difficult to accept. I'm coming up to one year since my 1st attack and it still feels so fresh! Sending you hope, strength and positivity my dear 💖💖💖
@@jessiebarry279 I'm probably going to go to the hospital for steroids soon. I was on Aubagio. But my health insurance provider at the time didn't want to pay for it, so I stopped taking it.
@@karalee4701 is there a different medication they'll pay for? This is so unfair, I'm just so sorry that this is happening. Steroids will definitely get you through this flare up quicker but not the long term solution 😔
Talk to your neurologist, make sure you're on the best DMT for you.
To hear you describe those pins and needles..I thought, finally, someone gets it! I'm currently recovering from cervical transverse myelitis and the constant numbness and pins and needles that don't go away are horrendous (I've no words). I'm glad you shared your stories, it's reassuring knowing there's someone out there who knows how I feel. Stay strong!
Thank you for the comment. I'm so sorry to hear about the cervical transverse myelitis. I havent heard of it before.
I agree, it's so reassuring knowing that someone knows the exact feeling of a symptom. It can be so difficult trying to explain it to someone who has never experienced it. I hope you recover soon, sending you strength 💛🧡
Hi. Thank you for sharing and I’m so sorry for what you went through. ❤ I was looking to see if you’ve updated since your diagnosis. I don’t see a video. How are you doing and any plans for a update video? All the best to you!
Lara constant pills and needles has become my best friend it is always their. I have rrms ms😎😎
@@jessiebarry279 I first started getting MS symptoms in 2016 once day I woke up I had double vision and my right leg and hand were completely numb. After dealing with it for a little over a month just hoping it would go away, my boyfriend took me too the ER. I live in a small PA town and my bf is literally one of like 20 black people in the entire county. N we've been together 14 yrs now and obviously we've heard and put up with alot of racist crap. However, when he took me to the ER that day, and the doctor literally took one look at me and him, and the first thing it off his mouth was "well, what did u do to her?" I WAS LITERALLY NEVER MORE APPALLED IN MY LIFE! N because this doctor already had made up his mind on what happened n what was wrong with me, it cost 4000 dollars to hear ABSOLUTELY NOTHING besides that I obviously need a new bf! He has NEVER hit me in the 14 yrs we been together! So, I only just found out that I just likely have MS in the last few months when I lost my vision again and both my legs were numb up to my belly button! But I finally got health insurance and have seen a few doctors n now have an MRI scheduled for next Saturday. I'm really really scared, but I really am just anxious n glad that something is finally gonna get done/, diagnosed n then hopefully learn how to manage my symptoms better!
You're Awesome! You're Brave! You're Beautiful..! Hang in there - thank you for sharing part of your journey. Remember you're not in this alone. Be strong - be well. ttyl
Hi, I’m awaiting an app for the spinal clinic I’ve already had 2 MRI scans, my Gp thinks I have MS because of other things I’ve had/got. You really explained a lot. Good luck with your treatment decision.
Thanks so much Louise. Im so sorry to hear that, best of luck with the spinal tap and results 💜 I'm glad my video was useful and I'll keep everyone updated with the treatment plan.
To you both, I have this condition and one thing that really helped me was when I went vegan.
💖 happy you finally got a diagnosis, I know it's been hard!
Thanks Dave 💖💜💖💜
Jessie, You are amazing. You speak so well on camera!! Big Love girlfriend - you got this
Thank you so much 🥺 and thanks for watching 💖💜💖💜💖
I have my appointment for MRI next week. I resonate with your pain. I just need answers. I’m glad you now know your diagnosis now and can manage it.
Best of luck with the MRI next week, I hope you get answers soon. It can be very frustrating and scary not knowing what is going on. Sending you strength and positivity 💖💖
How was it? Are you ok? Which symptoms did you have? Thank you
I just got diagnosed with RRMS today 😞 I had my first experience end of august. It’s been VERY scary. I have been in and out of the hospital since then. I am going to get IV treatments next week the medicine starts with R something? I am from the states but I live in Sweden now. There is another medicine I may try that they are considering to be a “cure” in some years called Mavenclad. It’s very expensive but I don’t imagine it to be in some years to come. I am going into this with a positive mind but it is scary. I am thankful I stumbled across your channel as I feel so alone with this.
I know, it’s so scary experiencing attacks and even just getting a diagnosis. I hadn’t heard of Mavenclad, it’s great to hear of new treatments. I hope your IV goes well for you and things begin to improve 🫶🏻 and I’m glad my videos help you feel less alone 🩷💜
Well Jessie. Like urself I'm an Irish woman. How brave you are. My thoughts are with you, my dear. I have been through almost the same myself. But Ireland as you know urself, our Health System is a disgrace. Took over 10 yrs. To get my diagnosis. I was told, I had sooo many different things in between. But I would not give up, We all know our own bodies. I knew for sure it was not what the Dr's were diagnosing. POLY this, that n the other. So I went Private and finally had tests that had never been carried out before. I was not shocked when I heard the MS. I suspected it myself. We will cope with this dreadfully awful illness. Pgod new meds. come on the market, all the time. But for sure more research needs to be done, ASAP. I wish you the very best. Stay positive, eat well, every little thing helps. God bless you. Evelyn. 🇮🇪💚
I’m so sorry you had to wait so long for a diagnosis and that you had to go private in the end. The health care system in Ireland is so inconsistent.
I hope you have a good treatment plan now. Yeah there’s always new treatments coming on the market and it’s great to see so much research goes into the disease.
Thank you for the lovely message, sending you love and positivity 🩷💜
I have ms now for nearly seven years and believe me...it's stays a surprise.everyday is n mistery. When people tell me ..wow you look so good.then I tell them ya you must feel it from this side
Same here.. i feel u
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You’re amazing, and can get through this. 💕
..I had my first ‘episode’ in 2014, and the worst of it lasted 18 months. I couldn’t walk unassisted, couldn’t speak, couldn’t use my gross or fine motor skills, etc. I had to quit my full time job, but over time everything came back, but I’m super sensitive to light/colour/sound/texture/pattern etc, and depending on the day my writing is horrendous.
Fast forward to 2019, aaaaaaand I have my second episode, which is absolutely no where near as bad as the first, but I get fired from my new job, and still don’t have a diagnosis.
Fast forward to now, and I’m still having involuntary body movements, have regular speech problems, as well as other symptoms, but I’ve just been diagnosed with MS. (As well as IIH)
Im almost 30, and have been having problems with my brain for basically my whole life, it’s nice to finally have an answer, even if it is a crap one.
You should look up ‘Terry Wahls’ if you haven’t, it’s probably not an answer for you, but it might help!
Stay strong, you’ve got this! 💕
Hi Rachel,
I am so sorry to hear your story. It sounds terrifying and I cant even imagine what an 18 month relapse is like. And I'm so sorry that you had to go so long without a diagnosis. It's so unfair. You're incredible for sharing your story and it's great to hear you have a diagnosis (even if it's a shit one). I hope you have access to treatment and it's going well for you.
Thank you for your recommendation of Terry Wahls, I hadn't heard of her before.
Stay safe 💖💖
@@jessiebarry279 I’ve fallen down a rabbit hole because of her Ted talk, and it’s fascinating! 💕
Just lost my mum to severe ms found out we both had have heds I have fybromyalgia but lot of symptoms had another MRI Waiting results
I am so sorry you are suffering. May God Bless you with healing.
I have MS and I'm in a wheelchair i never got any sympathy not even when i had Cancer i e give though everything on my own in my life ❤
Also, I have found that I have to eat and drink lukewarm items, I cannot eat hot foods anymore nor take hot long baths.
I am watching your channel as I lay here receiving steroids and not feeling well during a relapse. I totally get the emotion you show when describing it all. Thank you for sharing your story.
Awh I’m so sorry to hear that 😔 you poor thing, I know how tough that experience is. I hope you get through it quickly, sending you strength 💛💛
This video has given me so much validation, i have had similar attacks to you, i thought i was dying, in the end they diagnosed me with menieres disease but ive been getting lots of new symptoms and now they think ive been wrongly disagnosed. Ive experianced pretty much everything you have and im going back for another mri soon. Totally sympathise with everything youve been through.
Omg it’s so unfair the amount of people that are wrongly diagnosed. Those attacks are so terrifying so I totally get what you’re saying. I hope you get answers soon and get a treatment that suits you. Sending you so much love 🩷💜
Thanks for sharing Jessie, I was diagnosed just before Christmas myself. I'm still working out what sets of my symptoms between the relapes, its certainly a journey of discovery.
Thanks for sharing your story Jessie. Sorry you have to go through this but it obviously has not dampened your incredible spirit. You are an amazing person.
Thanks so much Deirdre that's so kind, and thank you for watching the video
Thanks for sharing your story. It’s extremely frightening to experience these types of symptoms and not know what’s going on. I don’t know if I have MS but I have an MRI next week to find out. Not knowing is what makes it so scary. I also just don’t know what is worth mentioning to doctors and what isn’t. I had a week of very scary symptoms balance issues, intense brain fog and confusion, numbness in my arms legs and face. But your story reminded me that I had an experience somewhat similar to yours one night where I was very sick all night vomiting and it got worse whenever I moved it felt like I could barely hold my head up. It was very hard to fall asleep and the nausea would wake me up. I thought it might be food poisoning but now Im second guessing it. I’m sorry that you experienced what you did, especially how you were treated in the hospital while going through it.
UPDATE: I had another visit to the ER a few months ago and turns out I had pancreatitis. I’m not sure that the symptoms I had experienced were related to that but that’s where I’m at now.
Did you find out what’s going on love?
@@Doodootrain Thanks for checking up on me! What’s crazy is all the scans and blood work came back fine. No lesions so they ruled out MS. What’s even CRAZIER is that I just got back from the ER after having a major speech impairment and twitching/numbness on the left side of my face and body. A second round of scans and tests evidently everything came back fine. The only thing abnormal was my blood pressure being high. They keep telling me stress or possibly TIA. I have a follow up appointment soon, but no answers still. I appreciate your concern!
@@linontheinternet good to hear your scans and blood work came back well! Praying that your healing ♥️
@@linontheinternet sorry to hear this happened! did you ever make more progress on diagnosis?
@@linontheinternet maybe microclots from vax or covid
You are such a trooper and have been through such a traumatic time. You will be a wonderful advocate for others. ❤
Thank you so so so much! 🥹🥰🩷
Well done! Thank you for sharing your story Jessie🥰 Keep smashing it💪🏻 x
Thanks so much Lauren 💖💜
You got this! I was diagnosed on November 10, 2021. It was at that moment I knew I had to give control to a body that lost control.
Sending you strength and positivity my dear 🧡 we got this 💪🏼 thank you for sharing 🧡
Well done Jessie 🙌🏼💜 very proud of you sharing your story and separately thanks for all the information on MS. I think a lot of people hear about it but don’t actually know the ins and outs of it. Keep at it 💪🏻💜xxx
You're a sweetheart Ceileigh, love you loads 💖💜 xxx
Jessie B 💜💜💜
It is very hard to define this condition. I got the news on my 50th birthday. I'm happy that I got it verily.
I'm sorry to hear of your diagnosis. I hope you have access to treatment and it's going well for you! 💖
What a birthday present. Actually I was happy as hell when I finally had an answer. Soooo happy. Then I found out all about DMT’s and that went away so. Dx at 45 on 12/15/22 Still haven’t started treatment. My legs hurt. Fun times
I had that dizziness and numb face and tounge for six weeks , it's unbearable I know exactly how you feel xx couldn't walk etc ,so horrible and scary xx
Thank you for sharing. I can relate to the feeling of having come to terms with it but still being upset at times.
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You are amazing, Good luck ya Irish lass.
That's so sweet thank you so much 🧡🧡
Sounds like such a traumatic experience. Im so sorry you went through this.
Thank you for sharing your very brave and I'm so very sorry....I'm scared but it's stories like yours that gives me strength ...peace ✌️
Thank you for the sweet comment. I’m glad to hear it gives you some strength. Hope you’re doing okay 🩷💜
I literally feel your pain and frustration.
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Your shingles story reminds me of my visit to the oncologist.He said, It's not leukemia and I felt relieved and sick. I thought, at least if I can name it, maybe I can fight it. I am a year in and have had 3 episodes where the vomiting and vertigo lasted a month each time and i am still waiting for a diagnosis. My best to you in your fight.
@@maletero9888 I can't believe you haven't got a diagnosis yet. That's so tough. You're right, getting a label on it definitely means you can work towards treating it. I'm so sorry that you have to suffer with these episodes. I really hope things begin to change so you can move forward with your life. Sending you positivity and strength 💪🏼💜
@@jessiebarry279 Texas... :( Let em die, we can breed more is our unofficial motto :/
I took some time to write up my journey so far. on the "10 most unusual symptoms of MS" he has ever seen, page linked below.
I had 2 of them. Cog fog and intractable vomiting. The rarity of THOSE symptoms that I have, kind of gave me the Idea I'm on the right trail. More than that, when the Doc said where he found his patients flair, I broke out my cd copy of my MRI and checked. Right there in the medulla oblongata, a small grub worm C shaped spot, hugging a vein and another nearby. :o I feel kind of stupid rooting FOR MS but I can't tell you how relieved I was to hear my oncologist say "Not Leukemia. Best th-cam.com/video/HBEk7Vd9di4/w-d-xo.htmlnld
Your video is very informative, you little trooper...I do wish you well, and thankyou for sharing your story...stay strong and positive... :)
Thank you so much 💖💜
Thank you so much, I really learned a lot from this.
Thank you for sharing your video. Wow! What you’ve gone through, girl 😢 Keep strong 💪
Thank you so much! 👏🏻
Brave girl …best wishes to you going forward 🙏
Thank you 🩷🩷🩷
I firmly believe it must somehow be related to food, metabolism, and cytokines. Most likely something is binding to the myelin sheath the immune system is trying to remove and in doing so it attacks the myelin in the process. It has also been pointed out that almost no one near the equator gets MS. So sunlight and vitamin D are implicated.
loely girlim so so sorry for all of this ,get well ,a hug
Thank you 🩷💜
When I think about it, I've been heat sensitive for years.
Heat sensitive for sure but the cold is my hell. I freeze sweat & my legs hurt even more than the usual searing agony. There’s no winning really 😭
That is an informative video I do hope that you can receive all of the helpful medications that won't have you dealing with such issue that this Multiple sclerosis sickness has done to you I also hope you recover it too I also have this Multiple Sclerosis sickness just as you said it just started out of nowhere but nobody wants to to believe me at all I was told I was just making it up and that I was just joking I don't joke around I gain nothing from it but at least I know they can't be trusted at all so they can think that I made up this Multiple Sclerosis sickness out of the blue and I can have some superpower that just makes this out of nothing and that's me being honest too .but I do hope the best for you
Thank you so much, I’m doing so much better now that I’m on a really good treatment. Sorry to hear people didn’t believe you. It happens to much to people when they are sick and it’s honestly so horrible. I hope you’re doing okay and that you have a good support system around you. Sending you love and strength 🩷💜
Such a clear explanation of the cause
I have cerebral palsy and 2as recently diagnosed with polyneuropathy so I can relate the polyneuropathy keeps getting worse as time passes between appointments how fast its spreading the neurologist said was uncommon it started in April and by fall it was everywhere and it's sensory and autonomic
My heart goes out to you, that sounds so scary. I hope there is a treatment out there for you to help with symptoms and stop the spread. Thank you for sharing your story, sending you so much strength and hope 💖💜💖
I know someone who had a type of chemo treatment for MS and has no more flare ups.
My balance is so bad now, I properly struggle to sit up 😞 Can barely crawl without tipping over 😢
I show so many people this video.. I was just diagnosed in US
Sorry to hear 😔 I hope you’re doing okay and have a good support system 🩷💜
Thank you for sharing your story, Jessie. That all sounds very frightening! I was wondering if you've seen the Code Blue documentary, and if so, what did you think of it?
Thanks so much for your comment 🩷
No I haven’t seen it, this is actually the first time I’m hearing of it. Did you watch it/would you recommend?
I am having similar symptoms. In hospital they’ve also made me walk and gave me anti-vertigo tablets and told me to go home. I am getting a neurologist privately, hopefully I will get some answers.
Best of luck! I hope you get answers soon too. I know it’s difficult waiting 😔 sending you strength and positivity 🩷💜
I feel sorry for you I really do get well soon 🙏
Off topic, but your sunglasses tattoo is killer 😍
Thank you so much 🥰🥰🥰
Any lifestyle choices that have helped you out? Just been diagnosed the start of this year and back to feeling normal after my attack but worried about the next one
Honestly the biggest thing I’ve changed for lifestyle is getting really good sleep. Every night I get around 8 hours. I try eat a really balanced diet too. I defo should exercise more but I’m working on that. Hope you’re doing okay 🩷💜
EBV, gut dysbiosis, LYME infections maybe other viruses trigger MS. So sorry you are dealing with this
I have ms diagnosed Jan 2021 ocrevus is what they want to put me on YOGA STRETCHING EXERCISE VITAMIN D MEDITATION it may not be a cure but all those help the brain were in this together 🧡
Just want to let you know my neurologist told me Ocrevus is associated with a 1% increase in breast cancer. He said Kesimpta is a better somewhat similar drug.
Lol 1% I don’t take infusions anymore they said I’m doing fine just continue my vitamin d
@@scorpionsting2581 1% is pretty significant, and I wasn’t sure if you were still on it, so I was trying to help. But ok.
We all gone die anyway
Indeed, it’s all about attitude change
You broke my heart 😘😘😘
I have generalized anxiety disorder, panic disorder and health anxiety. I have to stop watching stuff like this....really scares the hell out of me..
What symptoms do you have from it
@@Truerealism747 it stopped I am doing great now..I had a lot of mixed up symptoms. My muscles felt light on one side of body because i read about MS too much and my brain was tricking me, I had carpal tunnel symptoms too, i felt some heat waves somewhere under my thumb and forefinger like something was burning my skin, I was depressed, nervous, scared, my muscles were twitching here and there on several places of my body, shortness of breath and chest ache, aches on my upper legs mainly my calves... But didn't fell not even once, nor was dropping things etc. But I still thought I have MS. On extreme occasions I thought of ALS as well. GAD symptoms are the worse you can get its like a loophole, you feel stuck the more you think or read about your fears.
Big hug ♥️
Thanks so much Darragh 💜💖
This is my exact story. But I live in the u.s. so they just said we don't know what's wrong.... WTF man...
That’s so unfair 😢 I hope you get answers soon 🫶🏻
That's so bad, I am very sensitive to loud noises and I sleep with blinder is over my eyes.
Same lol & I pick up on every single background noise. Noise of any kind pisses me off and drives me insane. I hate it
Your episodes sound frightening. My younger brother has MS and was basically ok until his disease developed into Secondary Progressive. Then recently my daughter in law has experiences several boughts of vertigo, tingling, facial numbness and body spasms. Was taken to hospital several times this year. They say her symptoms are atypical. She finally had an MRI that showed several lesions but they will not diagnose MS until she has more episodes. She’s 37. She will be followed up annually for now. But they won’t give her a lumbar puncture. We’ll see how things go.
I am so sorry to hear about your brother and what your daughter in law is experiencing. I'm so confused as to why they won't do a lumbar puncture when she has lesions. This must be so tough and frustrating for her and everyone around her. Sending you all so much hope and strength. I hope yous get some answers soon. Thanks for reaching out 🧡🧡
Well done my angel 👼
Thank you 💜💖💜💖
Just as an FYI, the blood brain barrier wrongly allows the immune cells into the central nervous system and they then attack the mylen sheath (coating) of individual nerves, depriving the nerves of their insulation in spots. This causes a delay or a disconnection of the nerves to what they are connected to.
Wow, i just finished listening to the rest of your story. OMG, you had a frightening go and the system took so long to treat you. Thank you for telling your story, I'm sure it was difficult to relive. I hope you are well.
Was the mri done to find lesion with or without contrast?
The first MRI had no contrast. But after I had another relapse, my second MRI was done with contrast.
@@jessiebarry279 so without contrast too we can see if lesion are present right
@@sandhya431well I have had another they can see I'll
D lesions without not active just lost my mum to severe ms as present I have fybromyalgia
I am not an expert, but I have found out that since I have become a vegan my body has felt a lot better.
My advice would be to eat as a natural Lee and drink as naturally as you can. Avoid processed foods.
I found out I have MS in 2020 and I yet have not come to terms with it, I wonder how you accepted and came to the terms with it???..
To be honest, I'm not sure if I have come to terms with it fully. When I have no symptoms and I have energy, usually I'm in good form as I feel like I have my normal life back. But there's days when I just feel low about the whole situation. I still think about it every single day so it definitely occupies my mind. But I try to enjoy the days when I feel strong and try not to be too hard on myself when I feel low. I'm due to get my MRI results in a few days so it could change everything and how I cop with the situation. Sorry to hear of your diagnosis, it's not easy to accept. Sending you all the strength and positivity 💖💖💖
@@jessiebarry279 thank you for sharing your MS story 🙏 ❤️ as you to I'm sending love and strength with happiness to you.
That A&E/ER visit sounds terrible 😢😢😢😢😢😢
THANK YOU
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Yes girl I feel ya! Same here, ughhh
How’s my wee woman doing 🙏🏻❤️🙏🏻❤️🙏🏻❤️😊😊
I have Lupus and Scelerosis which doesnt hve cured 😓😓
That is so tough and I'm so sorry to hear this. I hope you're managing okay and have access to a good treatment 💖💖
@@jessiebarry279 omg thank you so much for replying me…. ❤️❤️ yes i will hope it will be fine one day 😪
God bless you 🙏❤ pet.
Thanks so much 🧡🧡
I first started getting MS symptoms in 2016 once day I woke up I had double vision and my right leg and hand were completely numb. After dealing with it for a little over a month just hoping it would go away, my boyfriend took me too the ER. I live in a small PA town and my bf is literally one of like 20 black people in the entire county. N we've been together 14 yrs now and obviously we've heard and put up with alot of racist crap. However, when he took me to the ER that day, and the doctor literally took one look at me and him, and the first thing it off his mouth was "well, what did u do to her?" I WAS LITERALLY NEVER MORE APPALLED IN MY LIFE! N because this doctor already had made up his mind on what happened n what was wrong with me, it cost 4000 dollars to hear ABSOLUTELY NOTHING besides that I obviously need a new bf! He has NEVER hit me in the 14 yrs we been together! So, I only just found out that I just likely have MS in the last few months when I lost my vision again and both my legs were numb up to my belly button! But I finally got health insurance and have seen a few doctors n now have an MRI scheduled for next Saturday. I'm really really scared, but I really am just anxious n glad that something is finally gonna get done/, diagnosed n then hopefully learn how to manage my symptoms better!
I’m so so sorry you experienced such racism. What an awful thing to say to someone. I’m also sad to hear how long you’ve waiting to get some answers. Obviously it’s a tough diagnosis to receive but I hope you get your treatment soon and begin to get back on track. Sending you love and positivity ✨🫶🏻
Keep that far left racist BS out of this....wish you all the best though...
Possible Reasons for RRMS
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Early
Somebody here have dental problems? I have my teeth are broken the dentist fix it and will broken again
Did you ever have mononucleosis? 95% of MS patients have had it.
Not that I’m aware of 🤔
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A&E treat patients really badly,you could be dying and they would sit you in a chair....terrible way to treat sick people.
I know, it's such a horrible experience 😔
Really sorry about it all but especially the cows who wouldn't help you in A & E!
Thanks so much Denise 🧡💛
Shingles? Seriously? Wow
I know 😔
Having new lesions to that extent in such a short period of time seems suspicious.. looks like they missed them 1st time around and are covering their asses