Yup, we have to diagnose ourselves and then pay a doctor for it...just great

I’ve had symptoms most of my life, always dismissing them. At age 42, the heat started bothering me. The fatigue was kicking my ass; considering how high energy I’ve always been. The skin itch in my right shoulder began keeping me up all night. Then I began feeling that vibrating electrical sensation in my feet. Then my face....the face was horrific pain. The muscle spasms wouldn’t stop. They began causing stiffness and severe pain. My balance was a mess, and I began falling a lot. It took doctors 3 years to diagnose me, even though my brain MRIs were showing lesions and they growing. After 10 years of diagnosis, my left leg is having a message problem because I can’t get my hip to left my leg without me having to swing my leg around. Back pain is my daily pain. I have such terrible dizziness that I literally feel sick to my stomach from it. MS had attacked my heart twice. Making it impossible to lay down during an attack. I have PPMS....and the symptoms never stop. But ...I’m still walking on my own...even though my lesions say I should be in a wheelchair. Keep up the fight!

As a couple of others have mentioned, this is also an indication of B12 deficiency. It mimics MS because B12 is required to keep the protective sheath around the nerves healthy. Without it, it disintegrates and the damage begins. I experienced all of these symptoms, along with a ton of others. I could barely walk, fell constantly, was developing dementia symptoms, couldn't physically speak at times, severe vertigo, on and on. They thought I had MS, but when the scan was clean they didn't know what to do. Months later, when I literally felt like I was weeks from death, one doctor realized they'd missed doing a few blood tests. Severe B12 deficiency. With treatment, I had some improvement, but was left with permanent nerve damage. While off work trying to recover, I developed a severe neuroimmune disease and have been almost completely disabled since. Fast forward 14 years, I've been experiencing new symptoms so I just had more MRIs done. I've got damage and lesions on my brain stem. Since so many months passed between the initial MRI and discovering the B12 deficiency, and because there was no second MRI done, I don't know if it's damage from the deficiency or if I've developed MS now, too. Waiting for further testing to determine the answer. Long story short, B12 deficiency is extremely serious. It does the exact same damage as MS, and people are sometimes mistakenly diagnosed with MS when it's actually a deficiency that can easily be treated. For some reason, a lot of doctors neglect to test for B12. I was shocked when I was told this was what was initially making me so incredibly ill, but I've since learned a lot about it. The past 14 years have been medical chaos for me. This young lady is very right.... don't rely on doctors to automatically know the answer. You know your body. If something doesn't feel right, don't stop until you find a doctor who will help you.

You are one heck of a brave lady. Thank you for doing this video. I will keep you in my prayers.

Your video encouraged me to go to the doctor and push for an MRI. No one thought I had MS. But I do. This was at the end of May. I’ve seen an amazing neurologist and am doing the paperwork and bloodwork etc to prepare for my first MS therapy - Ocrevus. Thank you so much for sharing. You literally are saving lives and getting people to seek out answers. ❤️

Thanks so much for your video and explanation. I may have the start of MS after a brain MRI showed lesions. It’s a sneaky disease and I love the way you filled in the lines between the dots. Your positivity and bubbly personality have filled me with the confidence to persevere with the specialist! Thanks again 🙏

Thanks, Rhian - your MS journey sounds a little like mine - not exactly the same symptoms, but the isolated onset of “unrelated” symptoms which in hindsight can be connected by joining the MS dots is EXACTLY what I went through. Thank you for sharing your journey - I am sure it will provide others (both diagnosed and undiagnosed) with some peace of mind. Well done.

I got diagnosed three years ago. Thank you for sharing your story and letting people know how to advocate for themselves and what to look out for.

What an amazing young lady. This video will help so many people. God bless you and sending good wishes for the future. xx

Thank you so much for this video. To sit with you and hear your storey helps with my fear and frustrations in this process of getting down to what’s happening with me. My Dr’s are on it and for sure it takes time to get diagnosed. Love your videos on this .

I have secondary progressive M.S and the twanging of the body feels like a pull back /let go catapultation of all my muscles and nerves so your guitar string description is another cool way of describing it, bless ya! ...❤️

I'm trying to figure out what's wrong with me now and MS has come up a few times. It's scary but I'm glad I found your video. It was really informative for someone like me trying to find some answers!

Thank you for you video 🙏 I find some many things related as a young mom . I’m in the stage of having symptoms & finding answers / test . You are a light of hope for whatever it happens 💙

I'm really scared that this may be the path that I am headed down. I already have a bunch of health issues and have noticed over the last few years of things progressing this way. I applaud your strength in sharing your story with such grace.

Thank you for sharing - the symptoms sound very subtle in the beginning and that really helps to know and hear about. Wishing you well!

The comment section feels like such a support group❤️... Thank you for creating the platform for us to share our experiences. God be with us through this

Your description of symptoms at 4:50 are a perfect first hand account of Lhermitts Sign a huge indicator for MS 👍

Hiya Rhian I've now been suffering with MS now for 23 years and have been on various MS treatments and because of PML I was taken off of the previous treatments but I'm now on gilenya which is doing its job by keeping me Relapse free, I know what you're talking about when u described the tingling feeling from the top of your spine to the bottom of it when u look down, I've been in & out of my wheelchair to many time's to remember which isn't a hard thing to do as my memory has got really bad over the past few year's. I really hope you find the right treatment for yourself, your video has been most helpful to me so thanks a bunch please keep them coming ✌ peace✌ from Dulwhich London

Cheers to you for keeping on those doctors!! My father was diagnosed when he was 45. He is now 89 and was able to stay out of a wheelchair until he was 80. He followed a special diet (fish, chicken, low fat, and took cod liver oil supplements). He has lived a very healthy life until his age caught up with him in the last few years. I sure know what you mean about doctors not listening though! I had slipped discs in my neck--suffered with tingling in my finger tips for 6 years and thought I had MS. My Chiropractor figured it out. I had the surgery to repair the slipped discs and got the feeling back in my left hand and most of my right hand. Life is unpredictable! Good luck and thanks for the great video!

Thanks for sharing glad to here you talk about again we with Ms suffer every day its a struggle thanks!

Just found your page and I was just recently diagnosed with ms this year and had a 3 month flare up I’m really glad to see that it looks like your living a good life ❤️I’m scared to see where life with ms is going to take me but I’m going to document it on my channel !

My mommy had ms and I miss her so much everyday ugh :( ppl with ms are truly the strongest ppl on this planet I pray for everyone 💗💗

Hey Rhian thank you so much for the guitar string description 😊 iv been having difficulty describing that sensation as i also have ms diagnosis 18mts ago and like yourself seemingly have had ms for 10yrs plus undiagnosed. Thanks for ur videos ❤ take care ❤

Thanks for the video. It helps people relate and seek help. The earlier you get diagnosed is the key. All the best for the future.

Thank you for your videos. It has given me courage to see my doctor because I’m having similar symptoms. I hope you are doing well! I noticed that you haven’t posted a video in awhile 🙂

Such an open and honest account of your MS journey. Well done for sharing Rhian. Sometimes, just being able to put a name to something helps reduce the stress of not knowing. xx

Thank you for sharing your story and making this video.❤️

Thanks for sharing ❤️ I’m 10 years diagnosed now too. Yes I get the electric guitar strum!

Thanks for this. I am 61 years old and have been having symptoms since a bout of measles when I was 25. Only one doctor joined the dots and sent me for an MRI when I was 53. Unfortunately I had a major panic attack and the MRI didn’t happen. Then I had to move due to domestic abuse. Now all these years later I am still battling to get a doctor to take my concerns seriously. In December 2021 I had an episode where my right leg decided not to walk anymore and I was hospitalised. An MRI on the spine showed nothing contributing to that problem. I went to see my doctor who has referred me to a neurologist as I told him I was worried it could be MS. However it’s nearly May and still no appointment. But your video has spurred me on to make a detailed list of symptoms. Thanks for the inspiration xx

Thank you for your video, loved it! I completely agree on going to the doctor as soon as possible, however, they don't always take you seriously as you said. We gotta fight for our health!💖

I really relate to this so thank you for posting. I was diagnosed seven months ago and like you I was relieved it was MS and not a brain tumour.

My sister has had so so many investigations for her autoimmune stuff and it’s debilitating. Every symptom she has, they put it down to mental health or chronic fatigue syndrome. She’s even spent £300 on a private appointment with a neuro. He referred her for bloods, MRI spine and MRI of the brain. Sadly no more information was found although MS was ruled out because there were no brain or spinal lesions. She’s 31 and doesn’t leave the house much due to pain and mobility issues despite being very slim. I’m so happy you managed to get diagnosed and get treatment that’s working for you ❤

Thank you for sharing all this. It helps to hear from other MS'ers about their symptoms, to remind me I'm not going nuts :-)

Thank you for this video. My GP thinks I have MS and has referred me to a neurologist. The symptoms you described are exactly what I have been experiencing and not knowing how to describe. Thank you so much!

This is a very good video to remind us that every diagnosis is unique. Thank you for making. Hope you are doing well! 🧡🧡🧡

Selma Blair. The famous actress went through the same exact thing. She had MS for years and no doctor would do a thing until she physically fell in front of her doctor because she couldn’t stand. Then she was diagnosed. Watch her story if you are interested. It sort of frightened me as I suffer from health anxiety so I try my best to stay away from these types of videos but it shocks me how doctors cannot connect these dots.

your description about the guitar string vibration is perfect😊 hope you are doing well nowadays dear.

I'm being referred to a neurologist as I over the last few months have had to have a suprapubic catheter fitted as I don't feel the sensation to wee until my bladder has alot of urine in it. Also I have difficulty sometimes getting out of my mouth what I want to say correctly. And keep laughing at things I don't usually find funny. I. Dont know if it's stress or neurological but seeing this makes me feel more not alone like. Hope your feeling better and great video.

Thank you!! I've just been told I've got MS and it scared the hell out of me. This has helped me to see it can be ok.

Thank you for sharing! It helps to hear what other people went through/ are going through.

Hey Rhian..great to hear your story. Have you heard about NMO? NMO more commonly has spine lesions. You can always ask your neurologist for a NMO anti body and MOG anti body test

I’ve just watched this. I’m at the point of waiting for mri for suspected brain tumour or ms. I had a diagnosis of fibromyalgia about 7/8 years ago and have been on medication to control it but new things are appearing and they are not associated with fibro. Especially the problems walking, like walking through waist deep water or treacle. So much effort. Other things I’d put down to peri-menopause but I’m questioning it all now. Was helpful to hear your experience. X

I definitely agree with your advice that you should write down all of your symptoms and bring the list to the consultation. And get those pathology diagrams and draw all the parts of your body where you're feeling tingles, pains, or numbness. If you show it to them it will be quicker than explaining everything. Very often GPs or specialists will want to rush you out of the room before you've finished explaining, because they treat you like you're 'whinging' or won't shut up about all the stuff that you are feeling. So they'll miss connecting the dots and delay diagnosis. Writing it down will also help you keep a record of progress and potential triggers, such as exercise, heat, cold, etc.

Thank you for sharing your story. You are so poised. I hope to be just as strong as you. ❤️

I'm currently in the process of diagnosis and I'm pretty certain I have ms. I'm 29 with a 4 and almost 3 year old. I definitely relate to a lot of things. Thanks so much for sharing your experience. I'm lucky my Dr has referred me and hopefully I'll see them in the next 2-4 months

Thanks for sharing, really well-spoken, I am currently going through the diagnostic process in Bristol England, hopefully I should get an answer in next few weeks

Thanks, This was a great video. Very well presented.

You are a very brave and strong woman than you for sharing your demeanour and approach to the situation is inspiring.

Thanks so much for sharing your story! May I ask did you have to get a spinal tap (Lumbar puncture) in order to get diagnosed?

I’m catching this one year later- I too had a long hard discovery journey. I fired 2 neurologist for pure stupidity- shame on them for not referring you to the MS Society for better up-to-date info. Bravo for sharing- my MS is now 21 years since diagnosis. After one year of Drs. and prescription drugs I found an alternative healing with raw foods, exercise and acupuncture- do your own research and find a support group as every MS case is personal. ♥️

I am a newly diagnosed MS person I am older 79ys young. Your vedio was every informative. Thank you I will continue to get your info.

Yes, am a fighter MMA, and coach for more than 29 years experience, now dealing with MS and Paraneoplastic syndrome,,, similar symptoms and I still keep my track going to the gym and others,,, but it really hit you, I mean I know I have it when I try to do normal things always do, and my body shoot down,, thank yoj for info, be strong be champ

Thank you for your video. I think as women we have so much to do Sometimes we ignore Our own symptoms

Thank you for the upload and sharing. I got diagnosed with ms in 2012. My first symptones was quiet a bit. It started with having vertigo symptones..went to the doctor and got told that i had crystals in one ear. But it became worse, then the right side of my mouth started to hang from time to time and had troubles to talk. It was horrible because people looked at me weird and didnt know on whats going on. Then i couldnt move my right leg. I got send directly to a neurologist and then i got diagnosed with ms relapsing remitting. And i do have it too when i look down...it feels that my head weights heavy then. And yes i still struggle with balance problems but it got improved by actually doing weight training. I can talk and walk normal again. Hearing you talking about it really makes me emotional. Stay strong 💕 youre a ms warrior queen. Lots of love towards you and your family

From Canada here. Sorry about your delay in diagnosis. Yes, MS is elusive, but your symptoms combines with your young age, should have set off alarm bells with the doctor, they are so classic. Glad you know and have treatment.

I was diagnosed yesterday. I’m waiting for my care plan and to start treatments.

Holy sh*t, the guitar strum is exactly how I describe it. I don't see it as an "electrical shock" as it's come up in other resources. Really interesting video, thank you for sharing

Wanted to add that trauma as in child birth releases benign MS. Mine came from a traumatic head injury- Good luck in your healing journey ♥️

Thank you for explaining this so well. Bless you ❤

Thank you. Just catching it now October 2019.

Stay strong! I’ve been living with MS since ‘09.

I have Hyper Ehlers Danlos Syndrome.... symptoms are very similar to MS. ( it can sometimes be diagnosed before an MS diagnosis ) If youre Doctor is saying you dont have MS but you know theres something wrong .... ask them to look into EDS ( Ehlers Danlos Syndrome). Best of luck , love and light to you all .

Huge respect your way my MS showed its there during a lifeboat shout 1 night when my vision went wierd and then i awoke weeks later totally blind in left eye, fast forward i founded and rune group cqlled Bikers With MS which is my way of helping folks so your way of helping does help othhers respect and well done

Such Great information, thank you

This video makes me feel less isolated about everything. I tend to ignore alot of smaller things that go on mainly because they feel normal to me. I first got an mri done because i had optic neuritus and they done the scans as a precaution only. They found lessions in my brain and had lumber puncture which tested positive for ms markers. They dont want to give me full diagnossis and treatment as they say its not progressed. But i feel it coming and going in sometimes diffrent ways and i know its this so i feel pretty alone with it all. Im havung a bit of a bad day of it today so looked on youtube for what others have experianced . It all concerns me as i work a pretty physical job in construction and dreading that day i cant do it any more 😪. Thanks for the video its good to see others experiances and know im not alone

Thank you for this. Your video just popped up and it’s weird because I have an MRI next Friday. I have had symptoms for years and recently just put them all together!

Hello new subbie thanks for sharing your story I'm also an MS patient. Following your journey.

Thank you so much! You explained your early symptoms very well! I have them so I know what you mean. I am not diagnosed yet as my MRIs are clear.

Ooh, girl! Low back pain is awful. I have many of these symptoms but after paying so much money with no answers and insurance rejecting all of the tests doctors want, and I feel better... I'll just have to stay focused on hydration, spinal alignment, anti inflammation diet/ lifestyle I'll have to crack on with life. I had a brain MRI and was told I have a beautiful brain. They only did an mri in my low back and neck, no lesions. They couldn't tell me what caused me to lose vision completely in my left eye for about 45 minutes. They said I have chronic migraines. The guessed that the reason I couldn't walk or stand was due to a Herniated disc. They were quick to suggest back surgery but after I scolded that idea, they sent in another doctor that retracted the suggestion because I was young. She already knew I wouldn't go through with the surgery (too many I've met have had more issues within 5 years of back surgery than before they had the surgery).

I also have rr Ms I sometimes have a hard time dealing with it but am learning more & more about it to help me though it Thank You So Much For sharing your experience !

Wow, that is so interesting, thank you for sharing! I had exactly the same symptoms that eventually led to my DX: numbness & tingling and Lhermitte's Sign. I totally agree that you need to track your symptoms because otherwise some will eventually be forgotten. And doctors are just not equipped to piece everything together for you over the years. You have to be your own advocate.

Thanks for sharing your information details, you are very brave and very good communication skills, be confident and enjoy your work!!! Sincerely!!!

The bending neck thing I had for months and did nothing about it . It was horrible!! Thanks for talking about the learning aspect. I too have those issues and missed my psychiatrist appointment because of covid restrictions I was diagnosed March 2018

Really love your video! You spread so much positivity despite the fact that you‘d have enough reasons not to be. I got my Diagnose for MS in September 2017 when I was 17. it was terrible for me especially the extraction of cerebrospinal fluid (I don’t know if you say it like this in English, I am from Berlin but I try my best with my English😁) It was so painful. But I survived. Prior to my diagnose I also thought that I just got a piched nerv but it wasn’t and there was one good thing.. my doctor knew exactly what to do. She transferred me to neurology in the hospital where I stayed for one week. To put a long story short, i first got a daily injection but I got the next symptom and so on. A half year with 4 exacerbation (everytime right before my exams in school, it was my last year and I wanted to reach my a levels.) so my doctor changed my therapy into lemtrada. My first injection was last year in September and I got infected by MRSA. It was a hard time for me and I was sick very often but know, I am fine. Next week, the second and hopefully my last injection will start and I really hope that lemtrada is my ultimate healing. What I originally wanted to say is that I really enjoy watching your videos and it spread hope and love and I want you to know that it really helps me to look at you being so positive about your own situation! It gives me the strength that I really need now because I can’t be that positive like you. Maybe it takes time and a few years and then I can be like you. Because you are my idol from every point of view. Hold on, I love you 💕❤️

Hi. What happened to you? I used to love your channel. I've been looking for it for a while and finally found it to notice you haven't posted a video in 3 years. And now it's all about MS. I have MS too. Been living with it for 11 years.

What a great video really helpfull. Thank you .

I’ve been having these symptoms after I had a heat stroke at work last year. They can’t figure it out. But the more I research the more point out to MS.

You’ve literally described everything I currently experiencing. I’ve had moments where my legs don’t work, I’ve got numb patches, tingling etc. I’m still having trouble getting drs to listen. I previously had an mri for some of my earlier symptoms but came up clear, and was sent on my way. This was a helpful insight into the process.

Omg. Most symptoms u said.. i totally relate to. Xxx. Been to neuro told i have essential tremor but i know deep down it will progress into somethinf like ms

Thank you for the video. ❤

Thank you for your video on MS. I'm 62 and believe I've had it undiagnosed since 27. Miserable and sick all this time.

Literally the best MS video I’ve ever watched!🙌 Thank you.💕 God bless you.🙏✝️

I was dx in Feb 2008 - dr thinks I have had it for 20 years. I love your channel!

I have MS! Great analogy with the guitar string!!

A lovely and great video about MS, thanks for sharing. One important tip: make sure, that You and Your kids are receiving plenty of vitamin D3. Plenty means sever thousand I.U. each single day. My first MS symptom popped up in August 1997, followed by just a few small symptoms later. Finally a big relapse in January 2004 lead to a MS diagnosis. I can still walk and talk, even though according to my MRI that is highly unlikely :-) Have been taking 2x 5000 IU of vitamin D3 since 2004, D3 level in my blood is (just) 75. Everybody should have this value over 50, while MS patients should aim for a value around 80.

Thank you so much. I realised just today actually that my latest symptom is difficulty swallowing. Haven't been offically diagnosed yet but, ja, I've basically had symptoms my whole life. My appointment with the neurologist is next week 11 May.

Great video and great personality,I really enjoyed watching the video and the way you explained the ms so beautifully and simple,wishing you all the success and please continue doing your videos because this the best cure for you ,thanks again ❤❤❤❤❤❤❤❤❤❤

Thanks for sharing your story.

Currently waiting for a neurologist appointment and spent the afternoon in A&E with the stroke team since my entire right has altered sensation.

Thank you for sharing your experience. I was just diagnosed with MS this year to noticing the numbing in my right hand. The year before I was also diagnosed with a pituitary tumor after dealing with migraines for 13 years. I know I should of went sooner but after last year I had enough because they were getting worse. Seems like I was having symptoms long before and didn’t know because I had trigeminal neuralgia, which is nerve pain in the face. I also had visual disturbances in my left eye. Light would seem brighter than the other eye.

I also suffer serious fatigue and have bad “brain fog”. Sad that MS have such a HUGE effect on memory and cognitive ability but I am SOOOO grateful for all the different meds that are now available and that they get more affordable every couple of years.

😊good info. My walking became limited about a year ago. I knew something was wrong but it took almost a year to diagnose my ms. On in fusion treatment now.

On and off, I’ve been dizzy, lately terrible balance that can’t just be weak hip flexors and ankles, blurry vision, over my lifetime, autonomic nervous system changes, migraines, more blurry vision, odd peopioception and tripping often. Sometimes even breathing issues that aren’t asthma. Twitches in feet. And in general, sleeping issues, persistent urination and extreme lethargy. Either depression or something else, but ADd meds and coffee don’t even help anymore…. I totally get the pins and needles, but only after sitting. I’ll stop because it could be a lot of things and yet definitely sounds like remitting relapsing. I just pray that they find a cure for this thing 🙏

Diffencies in b12 and b9 D can lead to experience all Ms symptoms . I had huge muscles twitching in all my body

Wow a great things you said there i hasn’t heard before, thank you

Me …Ms since 2002 …. My sister died from uro-sepsis due to ms .the heat or any temperature change kills me the burning skin and itch u can’t scratch and fatigue . I had covid and now long covid. She describes things beautifully

It’s hard to sleep at night because of the muscles constantly twitching and having to pee all night

I was diagnosed 3/2021…. I didn’t take it serious because I was hit by a car at age 8…. Never told anyone because I was afraid of hospitals, my mom etc. So Now at age 47 Things at getting worse at a rapid pace… I always had pain while standing for a long period of time… I thought it was due to the accident…. I was walking fine in January or before then I was on a cane for months, now I’m on a walker….. Still haven’t received my first dose of medication for PPMS…. I’ve had every vaccine known to men COVID, booster, TB, Shingles etc. I can’t remember them ALL…. Pray for me that everything gets better…. I was a School bus driver for 20 years off and on and the doctor stopped me from driving because she said it was too dangerous….

Very informative Ty ❤❤❤❤❤❤❤

I had all the symptoms she mentioned and I suffer with pain up to a point of a sudden paralysis. It goes and off without any reason/notice for 10 years. Been to different doctors but to no avail. But after we moved to India, an Indian doctor first check my Vitamin D level. True enough I am deficient of Vit D. She put me on 60k IU/week for 3 months and I carry on with a lower dosage up to this time. Im regularly checking my Vit D level every 6 months. Now, I’m as normal as any woman my age of 54. God is good for posting us in India and found a great doctor.