MS DIAGNOSIS - How I discovered I had Multiple Sclerosis.

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  • Опубликовано: 14 дек 2019
  • Hey everyone, I was recently diagnosed with Multiple Sclerosis and wanted to share with you my story so far.

Комментарии • 68

  • @DrMattiLabbratt
    @DrMattiLabbratt Год назад +22

    Sophie sweetheart, it’s a LOT. But…
    My MS presented exactly the same as yours did even down to your scan results at diagnosis.
    I was diagnosed in 1994 at 17.
    There were no treatments then but even so, the prognosis for our presentation is really positive.
    Im still RRMS, walking, have a family, got a degree, worked for years, and it will be 30 years since I was diagnosed next year.
    I wish someone older had told me this when I was your age so I am gifting you with this ❤️
    You will have some challenges to face but everything is going to be ok my darling xxxxx

  • @cheshrkitn
    @cheshrkitn 3 года назад +16

    I realize I am pretty late in finding this video but I am glad I did. I was diagnosed about 10yrs ago and like you, it was quite a shock. I went in for problems with my eyesight as well and near the end of almost a year of appointments and tests, found myself sitting in a neurologist office looking at lesions on my brain. It's a hard feeling to explain to people. When you are told you have an incurable disease like that. I am a little surprised they did the lumbar puncture when they saw you clearly had multiple lesions on your brain. When they saw all the lesions on me, and considered all of my symptoms, they really didn't need to do the puncture to know I had MS. Anyway, I guess I just wanted to let you know that you are not alone. I wish you all the best. Stay strong and positive. You are a beautiful young woman with a wonderful life ahead of you. Remember that MS does not have to control your life. YOU control your life and your attitude and can do anything you want to do regardless of your diagnosis. There is always a way to work around your symptoms and achieve what you want to achieve. Much love to you

    • @kristinas5714
      @kristinas5714 Год назад +1

      I would think brain lesions and symptoms would not be enough for a diagnosis … my symptoms are mostly trigeminal neuralgia who’s apparently is not common

    • @kimandtony
      @kimandtony Год назад

      @@kristinas5714 are you in any pain? I’m having the same but just all numbness on one side of the face

  • @kevinbaxter7390
    @kevinbaxter7390 Год назад +7

    As I have learned over the last 8 years…Questioning your Doctors/Neurologists about any new problems and don’t get fobbed off ,especially if your medical history involves Anxiety/Depression.
    Just a easy comment to make in a half hour appointment,or bounce you of to another Neurologist,and whole process starts again.
    We all know our bodies,and when symptoms pains are just not subsiding,keep pushing for answers,especially now you will get lost in the system.
    Stay well all

  • @nyrhockeychick4life655
    @nyrhockeychick4life655 Год назад +6

    Dx 12/15/22 at FORTY FIVE!!! To be fair, my first major relapse was in 2020 during lockdown. Took another 3 years for them to figure it out. RRMS. I still say I’m too old for RR but apparently it started when I was like 33. This has destroyed every single part of my life. My legs hurt soooo much; especially in the cold, before rain, anything below 75…but don’t go over 82 or they’ll do the same thing. I’m all brain lesions & a cervical and thoracic syrinx. Basically I’m always in pain & I can’t remember where my phone is 99 times a day….(in my hand). I’m fire. Not fine. This ruined me. They want me to start on Vumerity. I still haven’t started yet . I know I need to. Thanks for sharing your story ❤

    • @elijahclydedeguzman896
      @elijahclydedeguzman896 6 месяцев назад

      I feel you I was diagnosed quitelate as well. But my neurologist says that maybe I had MS when I was in my teens. I’m RRMS as well. But my first neurologist doesn’t say orgiven me prescription with regards to my vision problem. I have glaucoma on my left eye due to severe dryness of the eye due to fibromyalgia. But 2yrs ago I got problem with my right eye. I had double vision and I have blind spots on pheripheral area of my eye. So hard here in Philippines. Few of us only had MS it’s very rare to have both fibromyalgia and MS.

  • @grlsgamesandblunts
    @grlsgamesandblunts Год назад +1

    Thank you for this video. This will be helpful for a very long time.

  • @grandmaisback6052
    @grandmaisback6052 Год назад +1

    Thank you for sharing... it must have been so difficult to go through and to share. I appreciate your efforts as what you have shared has helped me. Thank you.

  • @phanley8254
    @phanley8254 Год назад +1

    Hope your doing okay two years on ...your such a lovely person ..your video has helped keep me calm I had my Lumbar puncture this week going too neurologist 12 th off January its hard too not worry

  • @lemonpeelangelfish
    @lemonpeelangelfish 2 года назад +2

    Thank you so much for sharing your story Sophie. I was diagnosed April this year. Hugs x

    • @SophieOnScreen
      @SophieOnScreen  2 года назад

      You're welcome, big hugs a diagnosis can bring up so many different thoughts and feelings! I'm here if you have any questions or need a chat xx

  • @helenemalecki8294
    @helenemalecki8294 Год назад +1

    I feel bad that I am just seeing this. I hope you are doing well? Diagnosed over 12 years ago. (stopped counting now) Like one of the comments on here feel that you shouldn't have needed the lumbar puncture. Especially since they saw the lesions on your brain. It is hard to explain to people as you look fine healthy and would never guess that you have ms. It is frustrating to explain to people who don't have it. They think you can still do everything that you used to do. Sometimes you can, and sometimes you can't. We are all in this together. Thank you so much for doing this video as it explains a lot and may share it with some close family to show them how it feels to learn you have MS. Hang in there and stay strong!

  • @hafsahasni1257
    @hafsahasni1257 Год назад +3

    My story is pretty similar to yours, my MS presented with an optic neuritis only in my right eye, that caused me blurred, grey and dim vision. I am 25 yo, I have always been healthy and led a normal life, i've never presented any previous symptoms.. it was one afternoon I that have stated experiencing painful eye movements, I brushed it off thinking that it was probably just stress or I hurt my eye muscles due to long working hours on the computer. I waited that it would get better with glasses, rest or just on its own but it actually started getting really worse. Within the next four upcoming days I started losing my sight too, it was so bad that I lost 80% of it in over one week (mind you I have never worn glasses in my life I've always had great vision). I knew it was quite serious but never to an MS extent. I went to see a generalist doctor, that after hearing about my symptoms sent me to an ophthalmologist , that did some tests, imaging and after hearing about my symptoms asked for an urgent MRI. You can tell that I was overwhelmed, confused and scared at this point, the results of the MRI came out instantly, the ophthalmologist sent me down to a neurologist again urgently and I had to get actually hospitalized for a week because my infection was so severe. The neurologist prescribed a lumbar puncture, the results came out after 10 long days of extreme stress and devastation since my vision wasn’t actually getting any better even with a heavy antibiotics and corticosteroids treatment... the results were positive an i have gotten officially diagnosed with MS at 25 and I really still don't know how to feel about that. Currently still figuring the whole treatment thing out, haven’t had the time to fully process or grief yet. I don't know what to expect in the future. And as a lot of people say in the comments MS is hard to explain as you look fine healthy and nobody would never guess that you have it. It takes an emotional toll on all of us... thank you for sharing your story it is very accurate and validating, it makes me happy to see that people got to live their lives even with such a disease it shows that there is always hope for us ! Much love for all.

  • @leoaimar1590
    @leoaimar1590 3 года назад +3

    Stay strong . Just like even a person without ms there will be times when things are bad and times when things are good . Enjoy life and I promise over the next decade new medicine and treatments are coming out . I’m positive multiple sclerosis will be stopped one day .

  • @__Wanderer
    @__Wanderer Год назад +2

    Hope you are doing well Sophie, was diagnosed a little less than a year now. Also optic neuritis but in my left eye, sadly now permanently blind in that eye :/ luckily I have a backup? xD Currently very scared to lose my complete vision, don't know what I would do if that were to happen. Taking medication now though and trying to stay healthy so hopefully it will be many years before anything new. Wishing you all the best.

  • @MyMSstory
    @MyMSstory 4 года назад +3

    Hi Sophie, welcome to MS life. Stay positive, smile everyday and keep setting goals to strive towards. Keep moving forward and leave MS behind as much as you can 😁🎗️🧡

  • @idraculaa
    @idraculaa 3 года назад +1

    Thank you 🙏✨🚀

  • @metaspencer
    @metaspencer 4 года назад +4

    Wow, you've had some real challenges ... but you seem upbeat and pretty positive!

    • @SophieOnScreen
      @SophieOnScreen  4 года назад +2

      Thank you, I'm trying to stay positive but I do have my ups and downs it's all part of this rollercoaster

  • @jillfortune1790
    @jillfortune1790 Год назад +1

    Thank you ❤

  • @user-tv2xw5mh7p
    @user-tv2xw5mh7p Год назад +5

    I also went for loss of vision and loss of speech. I thought I had a stroke. After a year and multiple tests and several misdiagnosises, I was finally diagnosed with MS.

    • @nyrhockeychick4life655
      @nyrhockeychick4life655 Год назад

      I identify with this comment. I’m just happy to know what it is at this point. Still took everything in my life away from me though - literally EVERY THING. Good luck on your hellish journey with this ❤❤

  • @abehl
    @abehl 4 года назад +4

    Thanks sophie for sharing your MS story . . I have lived with MS for 20 years now and will be following your journey. Stay safe, healthy and strong.

    • @priyankachoudhury8307
      @priyankachoudhury8307 Год назад +1

      R u from india

    • @abehl
      @abehl Год назад

      @@priyankachoudhury8307 hi Priyanka - yes I used to stay in India but now stay in the UK. Do I know you as I certainly know a Priyanka Choudhury

  • @quansue1480
    @quansue1480 13 дней назад

    I have been diagnosed with multiple sclerosis in 2008 when I was 32

  • @dannyesteban6211
    @dannyesteban6211 Год назад +2

    My first mri lasted about 2 hours because I kept moving 🤣 thinking back through out my life it’s possible I started having symptoms when I was 13 when I started noticing a sudden but short shaking of my vision which ended up being nystagmus which got me to finally tell my doctor about my vision problems, sudden unexplainable fatigue, balance issues, etc. VA healthcare for me is free thankfully because I have appointments on top of appointments now 🤣

  • @hersoul7775
    @hersoul7775 3 года назад +1

    I notice people with MS still have beautiful hair. I have a thyroid condition and my hair is fried and fell out a lot.

  • @margaretneanover3385
    @margaretneanover3385 3 года назад +1

    There's an increase in MS in one year. What's that..so many I see. Thanks.

  • @kelleysigler9759
    @kelleysigler9759 3 года назад +1

    🙏🙏🙏

  • @Truerealism747
    @Truerealism747 7 месяцев назад

    Was your mri a 1.5

  • @ericott2561
    @ericott2561 Год назад

    Me too. Same

  • @argentinarodriguez4170
    @argentinarodriguez4170 Год назад +1

    Hi, I just found you. How are you doing after 3 years? I hope everything is fine with you. I haven't been diagnosed but judging by the symptoms I am experiencing it has to be MS. The MS hug is so hard. I have it all the time. 😢😢

    • @__Wanderer
      @__Wanderer Год назад +1

      Make sure to see a Dr. about this / get an MRI if you are concerned about it. There is hopefully a decent chance it isn't MS.

    • @Truerealism747
      @Truerealism747 7 месяцев назад

      ​just lost my mum to severe ms I have fybromyalgia they say found out we both had have heds what does ms hug feel like as I've had pain upper body constant 7 years albeit has moved over time etc but they say it's fybromyalgia cfs

    • @Truerealism747
      @Truerealism747 7 месяцев назад

      Any update

    • @argentinarodriguez4170
      @argentinarodriguez4170 7 месяцев назад

      @@Truerealism747 , so sorry you lost your mom due to MS.

    • @Truerealism747
      @Truerealism747 7 месяцев назад

      @@argentinarodriguez4170 thankyou

  • @BernardAsagai
    @BernardAsagai 3 месяца назад

    I was the same, it was very slow.

  • @YJakane
    @YJakane 8 месяцев назад

    Hope you're doing okay now, this disease is random af

  • @BernardAsagai
    @BernardAsagai 3 месяца назад

    I was informed by my neurologist on my 50th birthday.

  • @SteveSolvesMS
    @SteveSolvesMS 4 года назад +3

    The cage is there so you can't move your head and they can get sharper images. It's funny, they ask you if you are bothered by enclosed spaces. But since we aren't they take it a step further and lock you in! My advise is just don't play the "What about the future?" game. Nobody knows. So just enjoy your life; whatever might come.

    • @SophieOnScreen
      @SophieOnScreen  4 года назад +1

      Thanks Steve! I know I need to stop worrying about the future and start living in the now!

  • @babybaby5893
    @babybaby5893 3 года назад +1

    You are ver pretty, I have noticed there are many really good looking MS patients, google anti inflammatory diet and meditation, they will help to prevent infection. Good luck

  • @user-sz9pz2bt4f
    @user-sz9pz2bt4f Год назад

    Dr. Alan Macdonald did an autopsy on 10 MS patients and found that everyone of them had parasites in their cerebral spinal fluid check out his lecture on RUclips!

    • @Truerealism747
      @Truerealism747 7 месяцев назад

      How is paresites cured surely caused by Lyme's or co infections

    • @user-sz9pz2bt4f
      @user-sz9pz2bt4f 6 месяцев назад

      A great start is food grade diatomaceous earth! Check out info on the benefits. Also, Ivermectin and Fenbendazole.

    • @Truerealism747
      @Truerealism747 6 месяцев назад

      @@user-sz9pz2bt4f well what's the link with autism and heds lost my mum to severe ms I have fybromyalgia CFS rccx gene theory my father had CFS now ok obvously Jas ADHD to higher inflammation in autism what are side effects of this

  • @JimBob-kl5te
    @JimBob-kl5te 3 года назад +2

    When the neurologist tested your babinski reflex was that abnormal or anything? Are your feet ticklish so was hard for neurologist to tell? 😂 Where in Scotland you from? Love the accent!❤️

    • @SophieOnScreen
      @SophieOnScreen  3 года назад +2

      I remember the neurologist like scraping the bottom of my foot, which was really uncomfortable but i'm not sure if my reaction to that was expected or not, he never let on either way. I also had to walk in a straight line with one foot in front of the other which i was pretty wobbly on. Haha thanks just outside Glasgow, I sometimes try to play down the proper Scottish accent but it slips out on certain words lol xx

    • @JimBob-kl5te
      @JimBob-kl5te 3 года назад +1

      Yeah that’s the babinski reflex. Why was it so uncomfortable? Are your feet quite sensitive / ticklish on your feet? That sounds a bit embarrassing being wobbly, but difficult being put on spot too. Your accent is great. Why play it down? X

    • @SophieOnScreen
      @SophieOnScreen  3 года назад +1

      I can have quite sensitive feet so it felt like he was digging into them soo hard 😔 it was embarrassing after I just said I dance a number of times each week and never noticed anything 🤣 I'm around so many non Scottish people every day that my accent has kind of adapted to this weird one plus I'm scared people won't be able to understand me 😂

    • @JimBob-kl5te
      @JimBob-kl5te 3 года назад +1

      Ouch that sounds painful! 😳 Are your feet not ticklish then or less ticklish due to dance? 🧐 Oh I see. Kind of difficult when put on spot and told to pretend you walk the plank though. No, you are easy to understand. Now sounds like an Aberdeen / Inverness accent though😋😂

    • @SophieOnScreen
      @SophieOnScreen  3 года назад +1

      @@JimBob-kl5te it wasn't pleasant at all! I wish the neurologist had been a bit more vocal about what these tests were for at the time and if what I was doing was alluding to ms (this was pre MRI, when we didn't know what we were dealing with). I know and it's such an unnatural way to walk I'm like surely everyone struggles lol. 🙈 Haha my accent has migrated about 200 miles 😁

  • @nice2meetUWenDoWeEat
    @nice2meetUWenDoWeEat 5 месяцев назад

    I know this was posted 4 years ago, but your voice sounds pretty croaky. Is that also from the MS?

  • @MarlinPolk-fv9us
    @MarlinPolk-fv9us Год назад

    Break up

  • @DrMattiLabbratt
    @DrMattiLabbratt Год назад +1

    *Update*
    After a 7 year remission off DMDs (my Neurologists decision as the last one Tecfidera dropped my Lymphocytes so low 0.37 that they withdrew it. It took 18 months for them to Come back up to normal and my scans have been stable and no relapses so my neurologist decided not to risk any more DMDs)
    I have just started my first relapse in 7 years and it’s all sensory. Almost identical to my first Relapse in fact in that I am numb down my left side and I’ve lost joint position sons at my left knee. My right leg is numb also but less so, and I have severe nerve pain in my upper left arm which I am managing with Pregabalin.
    It started 2 1/2 weeks ago and I have my MRI scan on Saturday 20th May which may be followed by IV steroids and possibly (depending on the scan results) a return to DMDs. Ocrevus or Kesimpta have been mentioned.
    But the point is that it is 32 years since my first relapse, i’ve just had a seven-year remission with stable scan results, and this new relapse is all sensory and are not motor and follows exactly the same path as my very first relapse.
    even with this relapse I can still walk at good speed, although I have to be slightly careful as my brain doesn’t know where my left knee is at the moment which makes me slightly Clumsier than usual.
    I just added this as I thought it would add extra context to what you may expect further down the line.
    I fully expect to recover 8090100% as I have done before.
    If I can give one bit of advice to give you the best chance of staying well in the long-term it would be to take vitamin D and to always expect the best outcome as staying optimistic and happy seems to have made a huge difference in my case.
    I mean in general as that doesn’t mean I haven’t had huge wobbles along the way and felt very anxious and depressed at times due to the enormity of been diagnosed with a chronic disease at such a young age.
    But outside these times it’s very important to get on with life and find joy and positivity in those you love and the world around you
    I did a lot of research when I was diagnosed in 1994 into the geographical spread of a mess and it was obvious to me that the further from the equator and sunlight, The more cases of MS there was and so I started taking vitamin D in 1995 way before it became recommended for MS patients.
    Good luck my darling - although I doubt you will need it!
    If you EVER need a friend to talk to I’m here for 100%
    All my love
    Rae xxxx