My MS Story: Initial Symptoms, Hospital Error, Diagnosis, Treatment and Positive Mindset
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- Опубліковано 13 лип 2024
- Three and a half years on from my first relapse, and after a significant hospital error, I was diagnosed with Multiple Sclerosis (MS) in August 2018. Having spent the last year researching the condition, I decided to create a UA-cam channel to share what I have learned with others around the globe, beginning with my MS story.
In this video I cover my initial symptoms; the hospital mistake made during my diagnosis; the MS diagnostic criteria, known as “the McDonald Criteria”; my choice of treatment, namely an infusion therapy called Alemtuzumab or Lemtrada; and I end by briefly discussing the emotional impact of diagnosis and how I was able to turn this experience into something positive.
Please like and subscribe this video for more content.
If you are newly diagnosed and in need of emotional support, speak to your doctor about what counselling services are available in your area. There are many support groups online and I am a member of / msuk1
Music - Honey by Moow: • Moow - Honey 30 minutes
Hi sweetheart, I was dx at 17 in 1994 - 30 years ago next year.
The diagnosis is a bereavement- it’s a mental possible loss of your future perfect health, career plans, parenting plans, everything your mind can torment you with..BUT
Like a bereavement, THE FIRST 2 years are the Worst I promise you❤️🙏🏼😊
I had 3 bouts of numbness from 1991 that were put down to trapped nerve, atypical migraine, stress…!?
I also had a bout of vertigo that was so bad that I had to crawl on my hands and knees to the bathroom as the whole world span if i lifted my head from horizontal that lasted 9 days. When the vertigo resolved I had double vision
I was finally dx when I had a further bout of right sided numbness including my head and lost joint position sense at the shoulder.
There were no treatments back then. And like you the MRI terrified me and I cried all the way through it!
I didn’t have a DMT until 8 years later in 2002, 11 years after my sx.
I’ve just come out of a relapse after a 7 year remission off DMTs- still all sensory- New lesion at C7/T1 which caused numbness down left side, loss of joint position sense at knee (that’s why you get that dragging leg-it’s still a sensory symptom)
Now 95% recovered without steroids after 5 weeks and am starting Kesimpta in July
I still get that utter Euphoria when my symptoms remit, and my heart & soul are full of gratitude for everything that my body can still do so well. I feel like every movement and sensation is miraculous ❤️🙏🏼
Back to now.
I’m still RRMS and have got my degree, had a family, a great career, my EDSS is only 4 so I’m doing really really well!!
When I was dx I wish an older person had gifted me with telling me what things would be like in the future as uncertainty is our burden.
Everything will be ok my darling as our prognostic factors are identical
Young, female, visual,sensory symptoms at onset
You will achieve all your dreams and become more Resilient, Resourceful and Compassionate than 🎉would ever believe
You’re going to be ok xxxx
I was treated like a drunk a drug addicted bum. I was treated like I was just lazy lost everything. Years later I had a doctor tell me it might be something else years later. I was called a liar for a decade. Blind in one eye fatigue double vision. Finally got a MRI oh by the way for the last decade you were not lying its MS. Thank you veterans administration..... mavinclad young lady
True to a point,in my case
I dont drink but walk like one
I was mocked as being lazy
Had a mri done but not diagnosed properly ....not given any meds ....
Slow progression of symptoms showed more abnormalities like vertigo,fatigue headaches
Most family n friends isolate u n u feel alone ...no help until someone does help u but they will also get mocked at cos they helping u....
@@shireenramnarain4005 you find out people are animals. i am telling you i went without food for days on end no heat no electric in the moddle of wonter in upstate ny. i tought i was dying. the hate.... i did not drink or take drugs even my parents and family looked the other way when they knew i had no food. as if trying to teach me a lesson. it was a nightmare for many years
@@ATL_Transparency_News i also feel like its a nightmare that i cannot wake up from
People dont understand what u going thro
Yes u right they r animals, no human qualities whatsoever....
I have helped others when they were sick ,(close families ,husband,also with an autoimmune condition ,but he has recovered cos HE earns the money n thinks he can get the med treatment )while i had symptoms of ms (,undiagnosed)but when they knew i was sick they kinda abandoned me ....then lucky my son 25yrs (also with an autoimmune condition )took me to a doc n diagnosed me with ms n i had proper meds ....but very expensive....
Many misunderstand n mock u
Its a hard life....i feel sorry for my daughter 17yrs (also with a different autoimmune condition) n my son ....for they r also mocked at.....only forced help from father who threatens to leave us...
@@shireenramnarain4005 it isa shame it really is. you see people for what they are. it is insane to see you have no value in their eyes. some of the abuse i endured i cannot even write about. the things i had to do for food and to have heat i had to shut my brain off and go on auto pilot pretend it wasnt me but it was. people love to abuse people when they are weak.
@@ATL_Transparency_News true
Hi everyone! Great video , thanks this is very informative.
I am a clinical neuropsychologist with hospital practice.
I don't like when people say MS is just a neurogenerative disease and that there is no cure, because imagine, you re there on a doctor seat receiving this news that impacts mental health and the whole treatment , that moment alone could destroy this person's future. And families are impacted as well. Today's reality is not just that, treatments are changing the course of MS and researches might bring the cure.
INSTEAD ONE COULD SAY: It is a cronic disease that requires shared responsibilities and the cure has not YET been found but, in fact there are lots of ways to control MS that are helping people to live a much better life than decades ago.
Reasons:
1- Nobody has total control of life, so everyone is at risk: fact.
There is no need to create anxiety over the future. The need is to trust a good neurologist and to change into a healthier lifestyle.
2- Everyone goes through a neurodegenerative stage in life, actually it is part go the aging process.
3-There is good control of the disease, so concentrate on that.
4-Also concentrate on self-care, good exercise practise, have lots of friends as we all have a social brain that requires social connections.
5- Trust your neurologist, talk your doubts over, be the master of your brain health and share responsibilities with the ones you love and trust.
6-Be kind on you first.
Thank you, this video was so comforting! ✨❤️
Good Luck in your journey
I appreciate your positive attitude
Hugs
I was homeless for awhile unable to get help. No one wants to help a grown man that looks healthy. I became homeless because of the MS and everyone said I was a liar. I lost everything I slept in gutters. I wanted to work but had no energy could not see well out of one of my eyes. Could not feel my legs under my knees. A nightmare try standing in a line with bad legs and MS fatigue f I r two hours for food. And told if you step out of line you need to go back to the end. Dx.d 2002 now I am 50 and am no where I should be in life because people do not like a healthy looking man trying to pull one over on the system. Then of course it's not fatigue your just depresses yes they call you nuts before dx a nightmare. To this day no one has ever helped me. But that's life
Great advice, thanks fir sharing your story. Just don’t discount your feelings just because it could be worse.
Thank you. I needed this.
The last sentences made me tear up: "You are loved and there is hope!"
Thank you so much for uttering those words as they really made me believe them! Thank you so much! 💕💖💛💖💕💖💛💖💕
Good luck to you home girl, you've always been lovely and you deserve all the support in the world. Keep strong x
British Lad Thank you that means so much to me!!! ❤️
you are glorious and you are brave. You are strong.
God bless you you’re gonna be all right
Thank you so much for sharing your story with us! I really appreciate your frank, honest discussion. Keep up the awesome work; you are AMAZING!
Thank you 🙏 xx
Well done for finding the courage to share your story , I’m sure this will be of great help to people who are in the position you found yourself in .. I’ll be staying tuned for your next Vlog 🙌🏼 Xx
Lauren Muldoon thank you! It wasn't easy but I'm so glad I've done it and amazed by the positive feedback. Thanks again for your support xx
You're so brave for sharing your story! x
Zainab Danjuma thank you, loving your channel too ❤️
Hope you're doing ok. We're all here with you 🧡
Thank you, we’re all on this journey together x
You’re so brave, beautiful women inside and out. I’m so proud of you ❤️❤️ x
Shannon Organ thank you ❤️
Very brave young lady you are. Thanks for your channel and story. I look forward to see more. Gabby diagnosed in 2019
Gabby Franks thanks Gabby. We’re all brave having to face this everyday. I hope you’re well my darling, thank you for watching and supporting my channel x
Well done. You have a positive attitude and that will help you so much.
Thank you for saying so
Good for you I face Ms last ten years
Thank you.
Great video. Thanks for sharing your story.
Gavin Dack thanks for watching x
Oh sweetheart you're such a beautiful lady this shouldn't be happening to someone like you. Lots of love and hugs.
Thank you. All the best
Thank you very helpful x
Thank you for sharing your story ✌️
You're most welcome, thanks for watching!
From knowing you in school to become this independant super woman, you have never failed to amaze me. This video is so raw and pure. You are courageous, beautiful and powerful. Thank you for being a wonderful advocate to those who can relate and those who want to deepen their understanding as well as wanting to raise awareness. Lots of love always. Sophia XX
Sophia Louise Abdellahi thank you so much for your comment. Love you more than I can say 💕 ❤️
Thank You
That was very powerful and amazing.
Just curious,since your diagnosis have you heard of any family members with it? I know you did say that there wasn't a family history of MS but that was in 2019. In our family my sister niece and three other family members (including a mother and daughter) have it that we know of - all female. Good luck I think that you are fabulous : )
So strong!!!
Thank you ❤️
You look good!
sorry you were diagnosed so young. my journey 2000 went blind on holiday then eventually after tests and years in 2016 diagnsoed with progressive MS. i understand your story. I had 2 VEP tests both positive for ON and slowing of brain with lesion. 3 different lesions on my neck/spinal cord. still no diagnosis. until second VEP showed a lot more slowing of my condition. good luck stay positive and look out for your diet i eat very healthy no processed and much less sugar and vitamin D and feel a lot better. xxx
Thanks for this comment. Sorry to hear it took you so long to get a diagnosis. I agree that diet helps so much!
Thank you very much for this video. I'm almost 47 and was diagnosed a couple of days ago. My symptoms are dizziness, numbness and pins and needles in my right hand and arm, painful shoulder....the dizziness lasted for weeks and was just awful. I found good doctors and am looking positively into the future. It has still been a difficult pill to swallow as you say... videos like yours are very helpful. We are not alone! And that's such a good feeling! Will watch your other videos now. Thank you. Best from Hamburg, Germany (and by the way: your botox looks great)
Thank you for sharing
You’re welcome, thanks for watching
Lots and ups and downs for sure ... hang in! That vision relapse is familiar to me and freaked me out too
You too Spencer! Thanks for commenting, I hope you're keeping well 🤗
Good luck, sweetheart, You are so very strong and inspiring.
Thank you Katarina, sweet of you to think so x
@@annamariakaf How are you these days I pray you are well.
God bless you and your family
We all love you
Sheriff Dibba love you too ❤️
I commend you !!!
It is used by athletics etc. Hijama cupping.
Hi, have you tried Wim Hof method?
I loose my eyesight too, and ive been given an mri of the head and it came ba k normal, but ive been getting tingling all over body
I was officially diagnosed in August this year. I have Primary Progressive Multiple Sclerosis. The health system in Australia won't cover my treatment (Ocrevis) and it will cost me $54k Au per treatment. Currently trying Biotin ( that I have to purchase from New Zealand) to try and slow down the disease. You are young, strong and brave for your age. Lets hope that they come up with a cure for this disease.
KPs KINGDOM I’m sorry to hear about your medication not being covered. I hope the biotin will help you, I also take it. I’ll be looking at alternative therapies on my channel very soon, particularly different vitamins\brain foods etc. The benefit of vitamin d3 is well documented, and I take 10,000 units daily, have a look online when you can xx
I was diagnosed Sept 19 this year. MRI’s contrast and no contrast of brain and spine. 8 brain lesions and three spinal 😢numbness and tingling began last month. A year before that I had heat sensitivity and fatigue. No answers at the time for that. Now I know. I’m in my 40’s. I’m thinking of Tysabri if I’m not JC positive. I feel like my life is over
It can feel like your life is over at the time of diagnosis but please believe me when I say it gets so much easier. I actually made a video about coping with your MS diagnosis that you might find useful. Please please please don’t give up hope because there is so much life left to live, and many things to be grateful for, even if you can’t see that at this point.
ua-cam.com/video/Qd9KgQEvn20/v-deo.htmlsi=8rABlitKMgOWCm5B
👍🏽👍🏽👊🏼
How long did the tingling in your left leg last for? I woke up one day and had that for about 12 hours in my right leg but it went away.
MS symptoms are different in everyone (not saying that's what that is, just that comparing symptoms to try and rule out MS isn't productive)
I have ppms it just started and never went 😢
Your more supported in groups online, than you are with family and friends 😢
Sometimes that may be the case but fortunately we do have access to these groups now.
I haven't been tested for MS yet but I do have a lot of the symptoms for it. I plan to get tested soon but while that happens, I've been trying to learn more about MS. One thing that's been happening to me recently is that whenever the sky is gray (meaning very cloudy and looks as if it's about to rain), I get very anxious and I don't know why but I just don't feel well. I don't know if this can somehow be related to MS (if it iS MS that I have). I've read online that anxiety can be a symptom of MS.
Yes it can be...bad anxiety.
I hope your test will reveal what’s causing your symptoms. Some conditions can be mistaken for MS so ensure that you see a doctor asap
Do your ears ring bad with tinnitus when it started? Does your tounge tingle? Hope they find a cure and you recover 100% God bless and stay strong.
Hey I haven’t felt those symptoms myself but know others who have. Thank you, I hope a cure is found as well. God bless you too x
Hello, I'm currently experiencing the symptoms of optic neuritis, I'm only 18 years old. I told my mom to get an MRI but she won't believe me. She dismissed me and blame me for it. I'm honestly scared not knowing what to do, my mom won't support neither my dad or anyone in our family. I have no health insurance yet and I'm still a student. In our country, MS is quite rare that's why they often ignore it and blame depression and anxiety. I went to countless doctor to check what's wrong with me instead of the support I needed, they prescribed me antidepressants instead. I'm hopeless at this point.
I hope you're doing okay.
Hi Raine, I can imagine how frustrating it is that you feel you're not being supported. Please keep persevering to get to the bottom of what may be affecting your eyes. You say you have seen countless doctors but are they the right ones? I mean do they have a background in neurology? MS is quite rare, rarer still in some countries (not sure where you're from), and the doctors you have seen so far may not have much knowledge of the condition and its symptoms. To make matters even more complicated, optic neuritis isn't always a symptom of MS, but I can understand why you would want an MRI scan to rule it out. The best advice I can give you is to find a way to see a doctor with experience, and I appreciate this may be difficult if you're not currently covered. As a student, perhaps reach out to your school and see if they can advise/help you.
Do you have symptoms of SEVERE eye pain behind the eyes and limbs that feel like cement
Sorry for the late reply, I have not felt this but everyone's symptoms are so different
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?
I haven’t been diagnosed..but I’ve suspected something was wrong..I went to the er about 4 months ago for severe dizziness and they said it was vertigo. at the time I didn’t really suspect anything.. or know much about ms but I’m starting to realize i have a lot of the symptoms as well , listening to people that are diagnosed tell their story is like I’m listening to myself, the symptoms are so similar.. lately my vision is getting much worse double vision, floaters, flashes of light. numbness and tingling, feelings of heat on my skin. Memory loss (which is very noticeable bc my memory used to be pretty good)extreme fatigue, balance issues, weird sensations on my body like feeling water go down my legs. And sometimes I get a tight feeling around my chest like I’m being squeezed. I also have eye twitching and ear ringing. And my throat will have a vibrating feeling along with the top of my head,my fingers will lock up often & a hand tremor. My symptoms are getting worse so I’m gonna try to see a neurologist soon.. just know you aren’t alone I definitely understand the feelings that you are experiencing.
Check for pots
@@kristispece1678 how are u now
Yes you've just described me. I'm not diagnosed yet but under investigation with numerous consultants and emergency hospital visits due to temporary paralysis. I'm thinking MS or Sjogrens, Venus Williams has it and the symptoms are similar
Check for Myasthenia gravies or dysautonomia.
At least they admitting they made a mistake. Mine wouldn’t.
Did you ever experience the back sides of your skull (behind ears as if you were cradling your head) tingling and having a rumbling sensation. This occurs with me often and especially at night when I am laying down.
Hi luvfitall, I can't say I have but MS is different for everyone. If it seems to bother you most when laying down, perhaps try to prop yourself up when going to sleep? I'm not a doctor but I am about finding solutions, and trial and error with different sleeping positions may help you to find a way to get some shut eye. My other tips are to ensure you're hydrated, not drinking too much caffeine (cut it out if you can), not drinking too much alcohol (again cut it out), and to destress before bed i.e. through guided meditation. Our symptoms may never really go away but little tweaks to our lifestyles can help to silence them, or mute them if we get the balance just right. I wish you all the best and I hope I have been of some help x
I get tingling no numbness in the joints of my feet and hands is this common and has anyone else experience this ? I also get arch pain then full on burning feet in both my feet after walking for 1 hour it makes it hard to even stand. I also get joint pain in my knees sometimes.
Hi Gloria I’ve experienced tingling in my left leg. I have felt something similar in my arms but that wasn’t caused by the MS, but rather carpal tunnel syndrome
How r u now plllllzzz pllllzzzzz reply
Dear Anna Maria,
Firstly I want to tell you how brave you are and my thoughts and prayers are with you.
There is a fantastic book you should read called “The Healing Code”
If you cant find it, reply here and Ill link it to you.
❤️🙏🏻
The Coyote thank you for commenting, please send me the link x
Every group or person I hear talking about MS seems to have symptoms that are relatively mild compared to my daughter and can still live normal lives. I can’t find anything for someone like her … that has tremors in both hands so can’t eat or do makeup or clasp her bra etc, and trouble walking and standing and bipolar type behavior that is difficult for the one parent caring for her as an adult to deal with … I understand that living with MS is difficult and sad but no one addresses how someone fully caring for someone with MS is doing. We are invisible robots that never need rest or relief apparently? 😕
Please look into natural ways to detox your daughter....it sounds like she has something(s) building up causing issues. It could be slowly from childhood, some exposure once or twice, food or drinks, or cosmetics or body care products....toys even.
There are things that you can do to help and heal yourselves!
Oh forgot to say check out.... MS HOPE - BEST BET DIET
Thanks Natalie, I have tried a very similar protocol, the Wahl's Protocol, and it helped me to shift about 3 stones of weight. At present, I avoid gluten, dairy and sugar, but I am not in ketosis as my daily carb content from fruit and veg is too high. However, for me, I find I feel best when consuming low-medium carb, medium fat, high protein. This is because I train hard so I am looking to build muscle. To be honest with you, my diet today probably resembles the best bet diet more than Wahls'.
@@annamariakaf Hi Anna, are eggs dairy?
Doctors do more effort for insurance companies than patients obviously
Which is why we should aim to be our own advocates and keep as informed as we can along the way. All the best
@@annamariakaf Thank you...
music too loud compared to voice
Thanks for the feedback. New video has no background music. Take care
Its funny when moneys involved then only then u get the correct mri results, shows the laziness of the hospital
Your unreal
Thank you.
I know I'm kind of off topic but does anyone know of a good site to watch new movies online?
@Holden Briggs try flixzone. You can find it by googling =)
@Koda Chaim yup, been watching on flixzone for since march myself =)
@Koda Chaim thanks, I signed up and it seems like a nice service :) I really appreciate it !!
@Holden Briggs You are welcome :)