MULTIPLE SCLEROSIS DIAGNOSIS STORY | living with RRMS
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- Опубликовано: 17 апр 2021
- (ALL USEFUL LINKS BELOW!) Hello everyone, I finally feel ready to share my MS diagnosis story. It includes a bit about what Multiple Sclerosis is, my symptoms that led to my diagnosis, the diagnosis process for RRMS and my experience so far of what it is like living with MS. This video doesn't contain absolutely everything I wanted to say because there is so much more from this period of time, but it hopefully gives an understanding of my experience and is helpful in some way whether it is learning something new, supporting someone else going through a chronic illness diagnosis or making you feel less alone if you are also a young person living with MS.
As I say in the video, this is entirely based on my own personal experience - I am not a doctor and I don't claim to know everything - everyone with MS will have a completely different experience it is not the same for any two people. I am also not looking for advice or suggestions in the comments, I am really happy with my care from my MS nurse, MS specialist consultant and with my treatment plan. Please do feel free to comment below about your diagnosis if you so wish or to ask any questions as I will soon be filming a Q&A video!
Watch my MS Q&A video here for more info - • MULTIPLE SCLEROSIS Q&A...
For more factual, evidence based information please visit the MS Trust website below -
mstrust.org.uk
/ mstrust
Here is the support group for 18-35 year olds living with MS - / mstogetherofficial
I found the Instagram page one sleepless night shortly after hospital and it made me cry reading everyone's stories and finally finding people who looked like me going through the same thing. There is also a private Facebook group which you can join.
MS Together Charity Walk Fundraising page for the MS Trust - we are collectively walking 2 million steps on 25th April!
www.justgiving.com/fundraisin...
My Instagram - / lottierainbow
Thank you so much for watching and for subscribing and sending a big hug to anyone else going through a challenging time with MS or a chronic illness xoxo
Hi lottie " Dont count the days make the days count "is one of my favourite thing to say . I've had m.s.since I was 21 I'm 53 this year. I had similar problem with diagnosis. So nothing has changed from how long people have to wait to be diagnosed. I've always remained positive . Even on my worse days. When people ask how I am I also say " got out off my own bed this morning " because your worse scenario is I could be in a nursing home. Break your day down in to a managing segments of what you need to do and what you like to do. I guess I'm lucky that with this prospective I have learned to accept. I was here before m.s so again I say m.s live with me not the other way round . Always give drug therapy a go .eventually any one can find the right balance. Never be hard on your self . Grab life by the horns. I always look at life and say my energy is too precious to waste it on trivial things. For any one reading this and has m.s enjoy life the best and safest way you can. And have no regrets. 💖xxx
Very sweet words dear We have try our best and yes grab bull by horns 🤗
God bless you
Yes bonus to feed yourself ,wash yourself ,do basic life skills ,and not be in nursing home!! I totally agree
Thank you for reminding me to have a positive perspective and value every moment.
It’s amazing that the doctors and hospitals take that much care to its patients in that part of world. Hospitals in the US pretty much dismiss you if you aren’t bleeding profusely, having a stroke or a heart attack. My symptoms are identical to yours.
I’m so sorry to hear that! It definitely wasn’t easy, I was dismissed several times from A&E over the course of a few days because it wasn’t urgent. A lot of MS symptoms are vague so they have to rule out other things first and it’s not very clear cut to make a quick diagnosis, this is quite normal even if frustrating. I was taken seriously in the end and admitted because it was progressing fast - when the double vision came on this is quite a serious symptom as is very debilitating as you can’t see. I hope you are okay and can get to the bottom of your symptoms soon x
Thank you! I have an appointment with a neurologist in 2 weeks. This has been going off and on for years now. This weekend I woke up with vertigo and double vision. What preceded this was weakness on the right side of my body, tingling, burning, and blurry vision in the weeks prior. Hopefully I’ll get some answers and I hope your journey with MS is improving!
@@JessieR229 oh I’m so sorry to hear you are going through all of that!! I really hope that the neurologist you see is a good one and that you can get the guidance and treatment you really deserve ❤️ please try and get lots of rest, your body is going through a lot! X
Thank you! And you as well! Much love and support on your journey! ❤️ keep posting updates!
@@JessieR229 thanks lovely! I mainly use instagram so you can find updates / MS chat there but will also definitely do more future RUclips videos about it too ☺️
It’s really comforting to see these videos and to know what I’m not alone. I had a lot of similarities in terms of symptoms. The main one being numbness. I was just recently diagnosed in February 2021. And it took like 3 weeks to fully get diagnosed. My vision changing was the key factor for me knowing that something was wrong inside my body. Thanks for sharing your story. 🧡🧡
Thank you ❤️ I’m so sorry to hear about your diagnosis and hope you are doing okay. Sounds like we have had very similar symptoms - yes, the visual ones are really scary and definitely a huge sign that something isn’t right! Sending lots of love xx
Hi its awful to hear. That how I got diagnosed with loosing3my central vision through the optic nerve. The numbness can be painful especially in the fingers .getting the right treatment is like jumping through hoops .you get 1 sorted then there's another 1 .the worse 1 to get help with was blader .you go for a wee and it's luke electric shock from your pubic bone and travelled up through your chest and out of every exit point possible. That like having tens machine on every finger end elbow. It's finding the right treatment for you. Xx
When I got diagnosised I was so afraid of waking up and not being able to move. 20 years later and that still has not happened. Thank God. Now, I have woken up blind. Was because of lots of swelling bwhind eyes and scar tissue from steroud shots in eyes. But hey I got vision back after treatments. Just moved up to progressive, all good grandson loves his rides on my scooter.
I'm glad you got your eyesight back but I'm very sorry they moved you to progressive. You are a very strong person. I was diagnosed in July of 2020. Well wishes to you. ❤❤
I hope you’re fine, i also diagnosed with ms since 2019 , it’s hard i know but we’re strong 🙏🏻
Thank you. You're such a brave young woman!
Hi Lottie! I was diagnosed in November also. I had to go private for a second opinion as my doctor thought I was fine. Thank you for this video! I have joined the MS together group 😁 I didnt know it existed. You are so so positive and bubbly I'm sure you light up every room you walk into ❤
Thank you! 💗 I’m so sorry to hear that you have also been through a similar experience - I hope you are currently feeling okay and I’m glad you have found MS together ☺️
I'm here for you. I too have RRMS , I was diagnosed October 2011. I had symptoms show up at age 23 but it had been misdiagnosed for years it was not until I was in my early 40s before it was confirmed,.My vision is bad especially during relapses it actually gets worse but once relapse has stopped sometimes vision goes back to sort of normal still a but blurry. And be careful with the steroids they can actually make the next relapse worse but there are times when you need them. Heat and stress are my triggers. I have 14 lesions but just did my six month MRI and a new lesion showed up this time . This lesion was 1.5 cm in size the biggest so far. The other lesions are o.75 to o.50 so yeah significantly bigger than these. I have weird symptoms and the pain is excruciating sometimes. I have to keep house at 72 degrees all year around just a one degree difference can cause symptoms to appear . I live in Tennessee so summer time can be brutal. Also a cooling vest that you can add ice packs to will help on hot days. We get what they call the MS hug , it's like a boa constricter wrapping around you while you are trying to breathe throw a coffee stir straw yep its scary but I keep telling myself to calm down and relax it will pass but it hard to relax when you can not breathe. Yes, being tired is a giving but vitamin D3 and B12 will help. Sending you love and hugs , you can get through this stay strong.
i just love how pozitive and happy she is despite what happened to her. I have ms and i wish i could be like her!
That's very kind, thank you. I am not positive and happy all of the time though!! It's totally okay not to be. But I hope you have some happier days and are currently feeling okay. Sending love and well wishes x
Thanks so much for sharing! I was unofficially diagnosed with MS about a week or so ago (My LP results are still pending but everything points to MS). It's been one of the hardest things I have been through but I am so grateful to have gotten my diagnosis so quickly. It's such a bizarre thing to go from a seemingly healthy person to a person with MS. I pretty much had a panic attack when they told me too. I just couldn't believe it.
I’m so sorry to hear that 🤍 it’s such an emotional time and a complete rollercoaster, be gentle with yourself - you will get through it and there are lots of better days coming x
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Thank you for sharing your story. You are so courageous and inspire me. I hope to be as strong as you. ❤️
Continue doing what you are doing. You have educated me so much about M.S. THANKS.
this is such a comforting video, i got diagnosed in august 2021. I also had double vision and numbness. it took 4-7 months for me to be fully diagnosed. thanks for sharing your story xx
Thank you so much for watching and I'm glad that it has helped you in some way. I'm so sorry to hear about your diagnosis and hope you are doing okay x
I was diagnosed in 1999. Currently having some MS flare-ups. I just wanted to commend you on the information you put out in this video! You have reserched well. So many need to be educated, so thank you!!
Hi,I was diagnosed in 1998,i had then a little girl,now I have a little boy as well! Is was the very hard to diagnose with MS…it took me months to realize that I have to go on! Currently having some flare ups !!!Much health!🙏
@@gabikynigou2523 hope you heal quickly! Thanks for sharing! ❤️
Keep being strong through your journey with ms you seem like a very genuine thoughtful person take care
Thank you!
Lottie you are amazing! Your strength and spirit is incredible. Xxx
Thank you so much for watching and for your lovely message - it’s really appreciated ☺️💙 lots of love xx
Ty for the video, I am currently heading towards the same diagnosis, still waiting to see. So Ty because this all makes so much more sense now.
I'm so sorry to hear that and hope that you have some answers and are okay x
Watching this in hospital 2 days after my diagnosis thanks for sharing your story
It really sucks to be young and have invisible problems im 26 and been having symptoms for about 9 months now got turned away from hospital and drs because "your young and heathlty" nothing to worry about finally early last week i was admitted after threw blood but i am happy to finally have a name for whats going on
I'm so sorry to hear this and hope you are okay x
@@LottieRainbow thanks you I'm am doing better now and back home :)
@@orbitingdecay6797 in general no it's not a symptom thankfully
For most people
I just got lucky and also have a bleeding disorder that has nothing to do with my MS
But nausea is a common thing for a lot of people with ms so the 2 together for me was not a fun combo that day ❤
I'm going through something pretty similar rn, I've been running to different doctors and hospitals, etc. Dr. at the hospital told me it sounds like my symptoms point to MS as I am a young woman as well. I just did a brain MRI, and will do an upper spine one soon, I relate to all your feelings of wanting them to find something, and all of the anxiety, helps me feel less alone so thanks for this!
I’m so sorry to hear that - such a horrible and unsettling time. I hope they can give o some answers really soon, sending love x
Incredible 🧡🧡 wish I’d have had this when I was going through my diagnosis, we had similar experiences it seems! Lots of love xx
Thank you so much for watching 💙 so sorry that you have been through it all as well but it is reassuring to hear similar experiences and symptoms isn’t it, even though not at the time you needed it - hopefully you feel less alone with it now. Lots of love to you too xxxx
Researchers discovered a strong correlation between bacteria and MS (Multiple Sclerosis). They found that those who have MS have very little Bacillus bacteria as opposed to the general population. My intuition led me to this theory and it was confirmed by these researchers. Researchers in general are discovering more about the microbiome and how important it is for mood, and even personality (risk averse vs. reckless behavior) etc. Type "Spore forming bacteria in Multiple Sclerosis" in youtube to see for yourself. So what makes sense to me is to take natural supplements that are proven to be powerful killers of harmful bacteria, this is: (Monolaurin, olive leaf extract and drinking a glass of parsley). Then take a probiotic that is full of beneficial bacillus bacteria, like Youtheory or JustThrive probiotic. If you know someone who has MS please tell them about this and have them try it to see if it improves symptoms or makes them completely better. Take either 1 or all of the bacteria killers: Monolaurin (from coconuts) at the vitamin store/amazon, olive leaf extract. or take about 15 stalks of organic parsley and blend in a little water with lemon to taste, then later in the day take Youtheory or Justthrive probiotic and please report back, I'd love to hear if this works or not in somebody with diagnosed MS. I'm a budding naturopath/medical intuit
I was just diagnosed with MS while in the process of starting a new job. I had started out with numbness in my right leg which then turned into pins in needles in my arms and in both legs. I was lucky to already have a neurologist established so I was able to get this figured out fairly quickly in my mind. This defiantly helps to know, you are not alone and that there are other people going though the same thing. Stay strong!
Thank you so much for this video, Lottie. I was just diagnosed in June, and STILL recovering from the relapse that led to my diagnosis. I have improved quite a bit, but have reason to believe I’m not done yet (hopefully). Videos like this make one feel not so alone. Your description of how steroids made you feel sounds similar to my experience.
I’m so sorry to hear about your diagnosis and relapse, I hope you are okay ❤️ I’m so glad this video has helped a little - it’s such a distressing and isolating thing to go through and yes steroids are awful for side effects!! Recovery takes time so please be kind to yourself. Sending love xxxx
Thank you for sharing. A close friend has MS and cannot imagine what it is like for her. You explained it so well, including all the things which must be so scary, but you wouldn’t consider if you do not live with it every day. I think one of the most frustrating things for the person I know is that it is a disability you can’t ‘see’ if that makes sense. Thanks again 🙂
I was diagnosed in march 2021, during pandemic. I heard like a big crack in my world, and didn’t know what to do and didn’t want to cry in those 10 days I was in the hospital and when I came out I cried a lot. Today and after treatment, things are getting better, but I will never feel like I used to do, specially because I have to work and sometimes I want to give up on myself. Thanks for sharing your experience, that gives me a lot hope that everything will be fine.
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My daughter had been diagnosed with autoimmune multiple sclerosis. She's been hospitalised for the 2nd time and today She had seizures and was taken to the ICU. They did MRI and
ICU doctor said they found a blood clot on one of the vessels in the brain so now they going to do a CT scan to zoom to the exact place and start my girl on blood thinning medication. I am going through so much and can't stop my tears and I have been praying for her. I love my daughter very much!
I feel you and yes ms and blood vessel problems do cause seizures
@@chris1960 yeah maybe it’s the blood vessels causing the seizures but seizures are actually a common symptom of MS
@@chris1960 MS can cause seizures especially if the lesions are putting pressure on the brain, if there’s no lesions then there’s a very low percentage
Grounding/Earthing🥰🙏🏻✨
That has to be so hard. Hugs to you mama ❤️
Loved watching your video, thanks for sharing.
The treatment sounds so clever.
i wish you the best. i hope youll always manage your illness the best way and that it will not affect your life and that you'll be happy. you seem amazing and really really pretty.
Thank you, that's very kind! x
Thank you beautiful for your experience I pray that you get well and stay well
Thanks for sharing your story.
A super helpful video. Thanks alot!
Thank you for watching and for the kind words!
I’ve waited 18 months for a neuro appointment. I have it on Sunday and as strange as this sounds I’m terrified they tell me “everything’s fine” I’m so exhausted and drained from this I don’t want to be here anymore. Praying they help me!
How did it go? I’m in the same boat ..
I hope you are doing okay lovely and that you have some answers x
I get that feeling of being terrified that you will be told there's nothing wrong with you....
Hi Lottie, I was diagnosed in April this year so can relate to your story. So pleased your on one of the top shelf DMTs. Big hugs x
Thank you so much and sorry to hear about your diagnosis as well. Big hug back! X
Lottie Rainbow Thought your video was very impressive and well explained - you’ve obviously learnt a lot about MS in a very short time. I am about to start Tysabri too. Wishing you rainbows 🌈
@@lemonpeelangelfish thank you! hope it goes well for you 🌈
Hi girl, was diagnosed in December 2020.good luck😙
Hi Lottie. I was diagnosed with ppms in Oct 2018. I am grateful that if I was to get this disease, I did not get it until age 56. My biggest problem is it affected my walking. I am so fortunate that my primary doctor immediately suspected. MS and started treatment after 6 months
Hiya, I’m so sorry to hear about your diagnosis. That is positive that diagnosis and treatment happened quickly 🙏🏼 I really hope you are doing okay x
Stay strong and positive love 😇
MS Is A Journey A Lots Of Testing ...Thank God For The Tools & Teams ...Stay Focused Pray Is What I Do
Researchers discovered a strong correlation between bacteria and MS (Multiple Sclerosis). They found that those who have MS have very little Bacillus bacteria as opposed to the general population. My intuition led me to this theory and it was confirmed by these researchers. Researchers in general are discovering more about the microbiome and how important it is for mood, and even personality (risk averse vs. reckless behavior) etc. Type "Spore forming bacteria in Multiple Sclerosis" in youtube to see for yourself. So what makes sense to me is to take natural supplements that are proven to be powerful killers of harmful bacteria, this is: (Monolaurin, olive leaf extract and drinking a glass of parsley). Then take a probiotic that is full of beneficial bacillus bacteria, like Youtheory or JustThrive probiotic. If you know someone who has MS please tell them about this and have them try it to see if it improves symptoms or makes them completely better. Take either 1 or all of the bacteria killers: Monolaurin (from coconuts) at the vitamin store/amazon, olive leaf extract. or take about 15 stalks of organic parsley and blend in a little water with lemon to taste, then later in the day take Youtheory or Justthrive probiotic and please report back, I'd love to hear if this works or not in somebody with diagnosed MS. I'm a budding naturopath/medical intuit
I had optic nuritus 3 months ago. The consultant gave me Methylprednisolone 500mg a day for 5 days. It sent my blood pressure through the roof and I felt like crap. My vision was almost back to normal after 5 days. I have a phone consult next week, hopefully I'll know more by then.
Diagnosed 20 years ago with RRMS. Now my MS has progress into SPMS. Thank you for your videos❤
Thank you for sharing!!
Dr. Wahls. She’s the master
Thank you so much for this video. Im currently trying to seek an invisible illness diagnosis. Not sure if its MS. Its something similar and I can't shake the feeling im over reacting or people think I am and dont believe me ect its good to know im not the only one that feels like that and should dig my heels in and get to the bottom of it
currently going through the same thing. hoping you got answers💜
Also found through the same thing pretty sure it’s MS just trying to get it diagnosed
Hey was it MS? How are u now?
Bless you ❤️ you explained things really really well and are so knowledgeable about your condition which is great. I will be seeing a neurologist soon because of tingling sensation on my left side.
If you're not already doing this..you can keep a symptom diary tracker or a food diary.. I find like stress (as you have said) can trigger symptoms, also caffeine and lack of sleep.
I wish you all the best in health ❤️ don't give up and stay positive no matter what ❤️ yes, it's not ideal and there is uncertainty but just take each day as it comes and live for the moment ❤️
I really like you video because is very helpful. I have a similar problem but still the doctors not confirmed yet I have MS but I had all that symptoms what you explained this video. I done so many MRI from last year until now, but now is starting more worst I'm tired quickly, my body is struggling to keep fit,sometimes is very difficult to walking also.But really thank you for sharing your problem in this video.
I got diagnosed on December 2019 and my story was really similar to yours but i was in the hospital for a month had a lot of exams and they gave me plasmapheresis and it helped me a looot! And after that i did try a treatment similar to yours but i vas alergic to it wich was a good thing ahah because now i am in the treatment that i was meant to be from the begining , it is just two infusions, the first one i had it on july 2020 and now i am about to have my second one and hopefully the last one! My treatment is called alemtuzumab is a new treatment but its really good!
I hope you get better and Your treatment can help with all your process xx
Glad to hear that Lemtrada is working well for you :) hope you’re well and thank you for your message! X
I have MS Too, mine is pretty mild but like you said it’s pretty unpredictable.
I experience the same thing on steroids i have to take for severe asthma, but I only take 60 mg. Its so hard. Especially, the doctors have been prescribing me low amounts, they can never get it right. I never get all the way better, then they gas light me and say that is because Im not taking high enough amounts even though im not the one prescribing it! Im the same way, the depression comes from not actually recorvering even though you do what the drs say and take medicine that makes you feel like crap. Honestly, sometimes I see cancer videos and Im like jealous, like well at least you recovered. Its really wild. Thank you for sharing :)
Being investigated for MS at the moment, this was really helpful. Thank you 😊
I’m sorry to hear that, wishing you all the best x
Me too. Hope you’re well
My thoughts are with Lorna, I wish you well 😊
👋 hi I'm 23 I diagnosed with ms when I was 21 since then I took dimethyl fumarate 240 every 12 h and fortunately I didn't have any episodes until now And my MRI haven't changed. When I first find out I watched a video here he said he cut down dairy and got really better I was hopeless and I listened . I think it was effective you might want to try it and also therapy helped too . I wish you keep getting better and better every day💖💖
Are you still on the medication? How are you feeling now ?
@@goodnessogechi5362 yes I am still on medication and still didn't have any episode and I still wouldn't eat dairy its hard though 😮💨 I want to cut my med but my doctor said no so I have no other choice
Hi! Thank you so much for sharing your experience with ms. I have a lot of the same symptoms of the numbness and tingling. I noticed my flares begin after I eat, well the zappy numbness feeling does. It’s exhausting and gets better if I lay down. I was just wondering if eating plays a role at all with you. Thanks again.
I'm sorry to hear that you are struggling too! Mine doesn't seem connected to what I eat no. I talk a bit more about diet and food in my MS Q&A video if that helps at all :) sending love x
I noticed that my symptoms get bad after I eat is that the case with a mess I have not been diagnosed …. waiting to see the neurologist
Thank you for making sucha great video it was was very informative on how your dealing with your Multiple Sclerosis issues.i am dealing with Multiple Sclerosis aswell not at all great having to be on this road but it is to only one that I'm on just waiting for that cure for it I have to deal with the right side my right leg and arm aren't functioning properly at all major weakness so I seems as if I were a zombie walk'n around so just waiting and dealing with the rest of the world hope'n that a cure gets here sooom.have yourself a great day
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Thank you for this.. I'm 41 and I am in the middle of getting a diagnosis of MS (if it's not WTF? ) watching this exactly like what I'm going through at the moment, double vision, walking like I'm drunk , trouble swallowing. I've had a negative lumbar puncture result and I WAS DISAPPOINTED! I'm hoping to see a neurologist soon to maybe get some clarification and medication, thank you and I hope you are well.
I’m so sorry to hear this and hope that you get some answers really soon! I completely empathise with feeling disappointed at a negative lumbar puncture. My MS specialist consultant explained that this is not key for diagnosis but is more about the symptoms and the MRI scans. Hope things improve for you soon
I am not a medical professional but my neuro told me lumbar punctures can help diagnose but aren't really definitive either way so try not to be too discouraged. I know it may not be the "best" way to go about it per the medical system but if you go to emergency medicine and are able to get an mri they have to read it that day then hopefully can refer you from there. For me, my numbness was full body one side and I said I know this is my brain please scan it
I'm not sure your symptoms or where you are located but if you are in America and are able to get an MRI in emergency that is likely to be your quickest bet to neurology. I hope things work out well for you soon. Typing this unable to feel half of my fingers :) if nothing else at least we are all in this together.
if you don't mind me asking....do you get double vision all the time or only when you look at screen like television, smartphone,etc
Thank you for sharing your story. You are a cute girl and you speak well. You, no doubt, have a brilliant future ahead. Cherish the good times and don't focus on the bad so much. Your future is a bright light. Go to it.
Thanks for sharing your detailed story. I am experience a lot of the same symtoms as you (numbness, vertigo, tingling) except the visual problems. I also have pain and some balance issues... do you also have a tremor?? I have had an MRI of my spine which revealed 3 herniated discs however I have not had a brain MRI yet and doctors are still not ruling out MS. Did you get a spinal MRI too?
Hey! How do you feel??
I got tremors and the exact same symptons as you. I got the mri for my brain and cervical spine which they both came back clear....
I'm really scared ...
Thanks Lottie 👍🏾
I'm going through tests for ms. I'm almost 100% positive I have it. Thanks for the video. It's quite scary but I think that's just fear of the unknown for me
Don't worry! You will be ok ♥️♥️ its scary but don't let it change ur life xx
Hang In There Keep Up With Others Going Through MS They Are Very Helpful Understand The Journey
Hey what symptoms do you have
@@sarahsmith9430 Numbness Right Side Balance Off
@@sarahsmith9430 in about 2 years i did an mri the doctor found one small white lesion and diagnosed me with Migraine now feel heavy on one side of my body arm and leg and I don’t know if it’s MS of something else
Hello!
Thanks so much for your video
I’ve had symptoms for years now and have had a recent mri and where I did have 2 white spots now I have 5
I get overheated really easily and when I get cold I get really cold .
I have also had glandular fever and also cold sores on my lip
Still no diagnosis for me
Very frustrating
Did you know where your lesions were located on your brain?
Thanks 🙏
Hey what was it that confirmed tour diagnosis? I have insane symptoms and have had 2 brain scans that are normal except I've had a sinus infection like my whole life apparently lol. Should I get one of my spine? Half of my face is now numb, foot drop, nausea and have had a fever for 6 months. So I was shocked when my scan came back unremarkable. Glad you are on your healing journey now though! I'm 31 it's been 15 years of this
Good evening Lottie I do admire your positive attitude I've had MS for a very long time when I was first diagnosed I got really bad headaches so my doctor said I needed to have a brain scan all my work friend's were just taking the piss out of me cause they'd say they'll be all on finding it I just took it on the chin I was a graphic designer working for a printing company so plenty of banter I sort of new it was bad news cause I got an appointment two weeks after you'll know appointments don't come around that fast when the neurologist told me my first reply was I've got a Son I'd never heard of MS part of me wanted to hit him I'm so glad I didn't I just came home to my wife and my son we cried a lot but one thing I didn't worry about my MS I chose to just carry on and get on with my life in fack we decided to have another baby she's now 22 I've been lucky but I'm 51 now and yes I don't work anymore but before I've had to have a eltric stem in my brain to help me with my tremors I'm gutted that I've had to finish working I just try to stay happy I'm only human humour is the best medication I do go to MS meetings and I get a lot out of them shame COVID has put a stop to all that I've had both of the vaccines still not confident about going out I've always worn my mask and remembering social dancing 🕺 💃 good luck Lottie and thanks for your video I'm sorry for my life story and my useless grammar 🤭 x
What a beautiful positive gentleman. Loved reading your storie. You are a good role model. For anyone just being diagnosed with m.s read other peoples history. M.s isn't the end of your life but a new beginning of another. Yes it may not of been what we had planned .but it's just a new plan. Thankyou for sharing the more we talk about our experiences the more it helps others. Continue too have your best life .💝😘
If you are comfortable, can you elaborate more on your facial symptoms? Was it eye twitching, lip twitch or Etc?
Omg same with the odd face thing! Love ur video 📹 💓
Have you heard of MS Hope? They have a documentary called Living Proof as well. My mom has RRMS and found it to be helpful
I’m having symptoms of this and worried. I’m 44. I have heat intolerance, lots of headaches, tongue numbness from time to time, cramps in my feet randomly. I also have nerve pain and diagnosed with Fibromyalgia since 2005. Scheduled to see my dr soon
How did things turn out?
Hi All, thanks for all your amazing prayers and unconditional love. Praise Abba our Heavenly Father and Christ Jesus always and forever. Glory be to God in the Most High 💪💝🙌🙏
Best news of the day is… my daughter's report came back from US and she got negative autoimmune MS!!!!! 👏🏼👏🏼👏🏼
And she finished her lunch today…. Literally finished everything…porridge, chicken vege and fruit puree
another good news, she has been transferred to the rehab ward for her speech and physio therapies..all these good news came on my 49th 🎂 birthday..that's on 28th June..Thank you Jesus for healing my daughter and giving her back to me in one piece. It's a miracle of God. I rejoice for all the tears and pain I went through since April😄😅😆🎉🎊💖💝❤
Wow the family remain blessed
My husband got diagnosed at age 26, 8 years on and he now have secondary progressive ms, his dad has it to x
God bless u girl
Thank you so much for this informative video. I am almost speechless. Finally there is someone who has my symptoms: tingling numbness and pins and needles in one arm and hand, vertigo and panic attacks. I am much older than you (46) and it all started with terrible vertigo getting out of bed (as you mentioned) in the middle of June this year. I cannot believe what's happening. My vertigo turned into dizziness and light-headedness that I suffer from almost envy day now (becomes more severe under stress). I have the feeling my contact lenses don't fit well anymore, but no double vision. My vision has certainly worsened severely, too. I also suffered from Epstein-Barr in 1998 and was out for weeks. Can you please tell me if and how your dizziness lasted? Best from Hamburg, Germany
I'm so sorry to hear this and hope that you are okay and can get some answers / medical support really soon. The extreme dizziness was only a few days but the sensations for weeks but all cleared up eventually with the help of steroids. Sending love x
Dizziness lasts usually a week to three weeks. Blurry vision comes and goes. During one of my attacks I lost my hearing in my left ear for about two months. Usually I recover within a month but never fully. The scariest attack I had was I lost most feeling from my chest down, I could barely breath, could not walk or balance, I was falling down with every step, I could not even use the bathroom on my own... I did get better, but recovery took the better part of a year. I'm doing pretty good these days without many symptoms, but MS can strike back within a few hours at any time. I've had to learn to walk in therapy three times now, and that took a lot of effort.
I have a suspicion that I may have MS. I have so many symptoms that I have heard in MS diagnosis stories. Sadly, I live in the US where doctors just don't listen to you. I have an appointment coming up that I intend to outright ask for a neurology referral. I'm armed with a list of alarming symptoms that hopefully my doctor will find just as concerning.
How did your appointment go?
@@reneelondon5457 I got my referral after alot of demanding just not at that appointment. I have since had an MRI that was not consistent with MS. However, I was diagnosed with Small Fiber Polyneuropathy. I am not fully convinced that it is the final diagnosis but rather another symptom
@@keishamurray2711 Thanks for sharing. I have alot of symptoms of Ms as well. I have an MRI scheduled in two weeks. I'm hoping I can get some answers to some of the symptoms I've been having.
Hey! I was also diagnosed in November by pure coincidence - I was doing a brain MRI to check my ear canals that turned but to be intact, but they found 20+ lesions in my brain and then the spinal tap confirmed it🤣 I remember my feet went numb 4 years ago for about a week and a half but it didn't bother me enough to think anything of it. Especially that it resolved on its own.
Good luck with your journey! I'm just coming to terms with my disease, I'm not on any DMD yet, I just immediately upon diagnosis quit smoking/gluten/sugar/dairy and started supplementing with Vitamin D. Still looking if I'm gonna take amy DMDs🤷♂️🤷♂️
@@bluecrystalpalace I do believe that the microbiome and the gut are key players in MS. but if MS was caused from a bacteria, then how come HSCT works?
@@anthonyghantous3052 i don't know too much about hsct, but i looked it up, it's chemotherapy. Chemotherapy kills most everything temporarily, including bacteria. In any event it's a simple experiment and I think you're worth it ;) just take note of your symptoms then get the bacilla bacteria and take the bacteria killers i mentioned. take it everyday for a week and see if the symptoms decrease or not. I'd say definitely take the monolaurin as the bacteria killer because the coconut oil aspects will help to replenish the diminished myelin sheaths as well.
My mother has been going through progressive symptoms that seem like MS but was told she had ALS. I was curious to know if anyone has had that same problem??? ALS can mimic MS. Because she has progressed so much they think it’s ALS but her symptoms are not the same like MS. She has almost every symptom of MS.
MS and ALS can look alike in the beginning but ALS progresses quickly and affects motor neurons while MS is much much milder and only affects the myelin that covers the nerves slowing down the signal without fully attacking the neurons like ALS does
Hi may i know what do you work as? Are you able to work after having MS?
Look up The Coimbra Protocol by a neurologist called Dr. Coimbra in Brasil.
Was diagnosed 17.02.2021. By accident, acctualy, i just wanted to check my spine😅
You're lovely and very strong!! ❤️
Thank you! 💙
Could you do a fitness/nutrition video for those with MS? Are there certain exercise to avoid with a flare Up etc?
Thank you for watching! It's definitely something I will look at doing in terms of exercise, as a qualified PT - I am not qualified to talk about nutrition however, and the evidence of different diets for MS can be quite conflicting. It's good to know that you will find this helpful so I will add it to my list :) hope you are okay x
Prior to major numbness in your hand have you had pins and needles tingling feeling in your body
Are you still able to work? I have been having symptoms for about a year. And maybe two or three sometimes here and there over the course of my high school years, I am now 22. But my main symptoms right now is that I can’t hold my bladder, I get numb off and on, I have really bad tremors, and I can barely walk after 10 minutes of straight walking. Today was my MRI of my brain scan, the neurologist already got back to me. It show that I have lesions in my brain that are currently in active, but nothing active recently. So he scheduled another MRI of the top of my spine to actually confirm whether or not it is MS. And I may have to have a lumbar puncture as well, after that. I’m scared to death.
I'm so sorry to hear this and hope that you are okay and have got some support or treatment. Yes I do still work as my MS is currently under control and although I get flare ups of symptoms, I haven't had a relapse for 7 months (since February). Sending love x
Hey, I was diagnosed in 2019 with RRMS, it took me a few years to get diagnosed. I’m on a disability pension. I have weakness that never really got back to normal. I have five spinal lesions and 8 brain lesions. I also have bladder issues and memory issues. I was 34 when I was diagnosed. I am currently unable to work, but I also have other medical conditions such as Raynauds syndrome, slipped discs amongst many others. My mobility varies daily depending on the weather. Just recently I have been using a walking stick and I have been in extreme nerve pain. I’m also immune compromised. I had a lumbar puncture which wasn’t too bad in itself, just make sure you lie down flat after it, because I got a killer migraine after being made to walk straight away from the stretcher to my bed. I wish you the best of luck with your journey.
Oh hun it’s awful. I had to go private including MRI to get a diagnosis. I was called by the Neurologist on a Saturday morning and my life changed forever.
sending lots of love!
As someone diagnosed 10 years in...its a roller-coaster of feelings 😂
How are you feeling now?Thanks for sharing.
I am currently well thank you (apart from the odd flare up of symptoms) and haven't had a relapse for seven months since starting my treatment! Hope you are okay!
Hello, did the symptoms of your initial main flare-up ever fully resolve (remit)? Thanks for this video. I was just diagnosed in August.
Hiya, I'm so sorry to hear about your diagnosis and hope that you are okay. Yes they did resolve! It took ages for my double vision to go completely back to normal - the muscles that are responsible for my eye movement fatigue quicker because of the nerve damage so this took a while to heal and occasionally flares up when I am tired - but mostly okay. I got all normal feeling back where I was numb / had pins and needles which is great. I get flare up of symptoms such as tingling sensations but I haven't had a full relapse of new symptoms that are consistently bad for seven months. I hope that helps x
@@LottieRainbow Yes, this does help. I appreciate you taking the time to respond. I have had double vision for a little over 2 months now, which feels like forever. I am hoping it resolves! 🙏
@@LottieRainbow Hello again, I hope you are well! I have one more question that I forgot to ask last time - just about how long did it take for the double vision to completely go back to normal? Were you driving at all? Thank you 😊
@@alexvitali4464 it took about one week for the double vision to go - but this is with the help of a five day course of strong steroids to speed up the recovery. However, it took a few months for my eyes to go completely back to normal as for a while the muscles were weaker and I had problems when looking to the side. No I wasn’t driving as I don’t have a licence but also I definitely don’t think it would be advised if you are seeing double!! X
@@LottieRainbow okay, thank you! 😊
💖
Thanks for the video. Very helpful. I’ve had neuro issues on and off for about ten years.
Woke up on 30th December two weeks ago with severe double vision having never had any vision issues in my entire life (42yr old male)
Wife convinced me to phone NHS24 on New Years Day and I was sent to A&E and admitted. Various CT and MRI scans with no conclusive results but a possible brain stem inflammation I got three days of IV steroids that wiped the floor with me.
I share the trauma of dementia and stroke patients and I was over the moon to get out yesterday after 12 days and no sleep the final four days.
I’m home in my own bed and I’ve still got double vision, but at least I’m more comfy if full of fear. Hoping eyesight returns in the coming weeks but have to wait six weeks to be seen again and discuss results.
I don’t know if it’s MS but my god it’s worrying. Your story has certainly helped!
Thanks
Thank you for your kind message! I’m so sorry to hear about everything you are going through - a really scary and emotional time when everything is so uncertain. I hope you can get some answers soon and that your double vision eases off ASAP. I completely empathise and really hope things improve for you. Sending love x
I really appreciate you replying as I’m sure you’re a busy lady! Well after 15 days of convincing myself I’ve got MS and no vision improvements I’m glad to say it’s finally improving this past 48hrs.
It’s going to be a long slow process to confirm or rule it out so for now I’ve just got to get the vision back to normal and hope it doesn’t return!
Thanks so much for messaging!
Stay safe and I hope you’re well.
John
We're u diagnosed with or without contrast in mri
Did you still have the numbness in your left side after treatments?
Went to my local er and got no help just got handed a lorazepam to try to stop my involuntary movements, it got worse the next day. I went to the big hospital in my area a few hours away, they decided to do a ct scan and it was fine, got a referral to nuerology in the bigger city, still waiting. Got dropped from my naturopathic doctor because she can’t do anything for me after I’ve been going to her every month for the last year and a half with building symptoms and she never gave any solutions or testing. I’m so frustrated and confused, my symptoms just keep getting worse, last time I saw my doctor I was in extreme pain after days of nonstop movements. I feel constantly confused or sick lately headaches ect. I hope I get answers the doctor at the big hospital said “I don’t think it’s ms no one wants ms” no I don’t want to be sick, (he was a stroke specialist as well) I just want answers and help.
Everybody here should see coimbra protocol...u will get ur life back
Here's the scary part of MS. One day youre perfectly healthy, feeling fine, perfect balance etc... You wake up the next morning and half your body is numb, you cannot balance or walk. MS can hit a person quickly. MS can cause many problems such as blurred vision, numbness, loss of memory, forgetfulness, brain disorders, poor balance, sleeping issues, RLS, back and neck pain, headaches, heat regulation problems, over sensitivity to touch, bowel and digestive problems, dizziness, cramping, etc... The good news is there are some great medications available to manage MS. Gylenia has been a good one for me. Capoxone injections were terrible. Best of luck, and hang in there. Oh, and try to get some good medical insurance, as treating MS is expensive with neurology, blood tests, CAT Scans, doctor visits, medication, etc.
Have not been diagnosed. Waiting for MRI. Not sure if I have MS, Parkinson's, or what? But my symptoms started with ataxia. If you don't know what ataxia is, it is a fancy medical term for walking like a drunk. This has progressed to problems swallowing and speech problems. No numbness or tingling. My vision got bad before the ataxia. Also the "balance" problems are not from dizziness. It is muscle control and muscle weakness. No loss in cognitive ability.... I don't think? I'm in college and have a 4.0. So, some symptoms sounds like MS.... Maybe?
Difficult to say. MS is diagnosed by ruling other things out.
My case was an odd one according to doctors. My left arm and legging stiffinening and tingling just before.
I have good grip, strength and balance. New it wasn't a stroke cos I could think and speak clearly.
GP told me if things seem to get worse go to A&E who told me they don't know why my GP would send me here for cramp.
Finally got to see a neurologist and got the MRI and lumbar puncture. Got diagnosed with MS.
You may have Chiari Malformation or Lyme disease. That’s what I have and I have all your symptoms.
Your symptoms are identical to mine. The tingling is horrible!!! My MRI showed 1 white fluid spot....they said migranes. I know this is no migranes. Facial tingling, pain in my arms and legs, unstable legs, extreme fatigue, decreased urination, bad vision in one eye, etc. I wish this on no one. It's so horrible. Just saw my neurologist, he ordered different test because this has gotten worse by the day.
Grounding/Earthing🥰🙏🏻✨
Hope you are doing well
I'm suffering same situation..
Hope you're OK. I see my neurologist tomorrow and I'm scared as hell
I’m like that too and was rushed to hospital I thought I was having a stroke.I’m still not diagnosed but wondering about hemiplegic migraines.I see my neurologist soon .
Glandular fever, aka Mono, Mononucleosis
I'm scared and live in London. I have just been referred to a neurologist as I have numerous brain lessons. How long do you think it will take me to get a ms diagnosis?
Have you heard anything yet Ash?
@@ecb1979 thanks for checking in friend. Not official yet but the doctors say it looks like PPMS. I'm looking into vitamin d at moment.
Musicians Against Multiple Sclerosis@ Salutes you.
MWM@
So as I understood pins and needles sensation come on one side right?
Yes in that particular relapse it was all left side
Utrecht hier :-)
I was diagnosed with optic nerve atrophy which after 3 years of symptoms I was diagnosed with ms my mobility and constant vertigo is what I struggle with oh and the pain,pain,pain x
@Paddy Coppers Pencil 🇬🇧 43 when symptoms started
Been going through some horrible symptoms for over 2 years now, and I’m so tired with not having any answers.
Mine started 2 years ago with persistent pressure headaches and then a bout of vertigo for 6-8 weeks. Ever since then my balance is all over the place, i have neck and mid back pain which causes crawling/tingling sensation and tingling in my feet and hands. I have had so many tests brain mri, spine mri, ent consultant, blood tests and nothing has been found. I convince myself i have MS but never had vision problems. I feel very uncoordinated and can no longer exercise. Covid certainly hasn’t helped with delays in appointments.
Oh I’m so sorry to hear that! So frustrating when it’s unknown and I’m sorry to hear you are struggling. A brain and spine MRI would usually show MS quite obviously so perhaps it is something else. Either way, do not give up and keep pushing them for answers!! All the best
Have u had your thyroid checked? I had all these symptoms I didn’t believe the drs and went private for scans and bloods and thyroid was way out of Wack I’m now on thyroid replacement meds
@@aprilhughes3749 hey April. Thanks for the response. I have had my blood taken do thyroid problems normally get highlighted within one? I havent had any mention of thyroid problems
@@joewebster1408 so you need to get your tsh, ft3,ft4 and antibodies tested, I suffered with pressure headaches, crawling light tingling in legs arms shoulders stomach, muscle twitching, buzzing like a vibration in my foot, muscle aches and joint pain and. Real bad anxiety to name a few, my thyroid was really low so not making the right amount of hormones so I needed medication it’s a autoimmune disease called hashimotos maybe worth testing your gp should do it if u ask x
@@aprilhughes3749 ok thanks for the advice x
Hello, in august my wife 27 years old, was diagnosed with stage 4 stomach cancer, been the hardest time ever, but since last week, I’ve had tingling, numbness, pins and needles, in my legs arms feet, feels like you can feel blood running through with air bubbles. Don’t know weird, sometimes my skin feels like it’s hit by a cobb wenb, don’t know if my wife situation brought it on, stress maybe but even getting lower back pain.
I’m really worried I’m not diagnosed yet but fearing the worst, I’m 28 years old always been fit and fine. Sad times
I have those same symptoms! Particularly the airbubble feeling in what seems like veins but have you found out what that is? I try to describe it to my dr and they dont seem to know what it is
@@neena9202 don’t you hate it when you post a comment and someone takes ages to reply, look at this fast reply ;)
No they haven’t found out yet, I went the Drs they wasn’t really concerned, said things might be stress/lack of sleep
I hope that it is that, I have a neurologist appointment in feb, that feet feeling went away and I’m just left with muscle twitching everywhere legs bum stomach face tongue. Kinda scared of ALS. Hope it ain’t sinister already lost my wife just over a week ago to cancer.
Hopefully your symptoms go away
@@JaguarsHD I've just read your comment and I'm so sorry for the loss of your wife.I'm here with tears in my eyes thinking that is no age to die, as your wife was so young.Really feel for you.Hope you are doing as well as possible and that your health has improved.
I hope you have got a good support network around you and that your family,if you have some ,and friends are helping. Just wanted to acknowledge your message and send you my best wishes and a hug. Please look after yourself.
Hi my calf muscle get spasticity in it. And it feels like leg being pulled down . Can any relate please also fasciculations in general.
I feel also same I'm my calf muscle n thighs
@@inayanoorani29 I have fasciculations ,jerks. ,eyelids are effected to
I have some symptoms of MS. I had a my MRI a couple weeks ago and the neurologist gave me results today saying they were clean but he didn't show me the picture and or explain anything to me. I haven't felt well since I caught mono at 17 and now I'm 31. Drs. always tell me it's my anxiety and since I'm young, and most of my blood work comes back normal that I shouldn't have anything wrong with me. Last blood work my Vitamin D was low and high white blood cells that come and go. They can't figure out why my white blood cells are elevated on and off. Also, I've been on vitamin D for about a year now and feel no difference. My symptoms are extreme tiredness! All I wanna do i sleep. Black dot in the middle of my vision and other floaters, flashing lights. Constant twitching on my top and bottom eyelids..sometimes in the corner of my eyes. Ringing ears and muffled hearing. I have a hard time swallowing..like my throat muscles are too weak to push my food down normally. I constantly feel like I have a lump in my throat. I've felt twitching inside the front of my throat. I thought it was my thyroid but I've had MRI on my throat and apparently it's fine and thyroid blood levels. Numbing sensations in my face and scalp, the back of my neck. I feel like it's in my brain too. I've felt the right side of my brain jolt or something, scraping sensations and other weird unexplainable sensations. Bad headaches. All four limbs get numbness but my left foot is almost all the time and it goes up to my knee. Vibrations in my chest. Elevated heart rate. Sharp pains in my fingers. No sex drive. I feel like I have sore throats all the time too. And severe dry eye. Muscle spasms all over. I feel like my brain is slow.. I stumble on words and pronounce them wrong or can't get the word out. I'm forgetful all time. Swollen painful lymph nodes that come and go. Mostly in my neck and along my jaw. Frequent urination and sometimes I can't hold it or very little pee comes out. I'm not sure if all these are symptoms of MS but I've seen quite a few Drs. So far and been to emergency rooms for all my strange symptoms. They can't seem to find anything. Last time I went to the E.R they sent 60 different blood tests and have ruled out about 70/80 percent of diseases etc. Idk what to do. I feel like I'm crazy at this point and never gonna get a diagnosis. 😭😭😭 Does anyone else have any of these symptoms? Or a suggestion on what it can be?
Me!!!!! Omg you literally pinpointed what I’m enduring as we speak. My taste is off.
@@deidrajones1052 How long have you been having your symptoms?
@@gabriellemasinas9984 only for about a month or so. But, I do have a history of pain. I don’t know if it’s anxiety or not! 😭 heavy on the “I feel like I’m crazy at this point” cause I either have terrible health anxiety or something with my nerves
@@deidrajones1052 I'm sorry you're experiencing these unexplainable symptoms. Have you been to the Dr. recently?
@@gabriellemasinas9984 yes, I have! I also just tried to clear my ear wax. It helped with some symptoms. But, still looking for answers. I give credit to those who have the strength through this diagnosis though. And Same to you! :(
Hello sis could u tell me esential tremor possible in ms