My MS Diagnosis Story at 20! (Relapsing Remitting Multiple Sclerosis)
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- Опубліковано 2 жов 2024
- So, I was diagnosed with Relapsing Remitting Multiple Sclerosis.
This video is a simple version of my journey for the last year.
Please let me know if you have any questions or want to share your story in the comments. I believe everyone with multiple sclerosis is a warrior!!
The link below is to my Ocrevus Treatment Update:
• My Ocrevus MS Treatmen...
Always stay strong xx
I swear a person could come in with an axe sticking out of their neck and some doctors would attribute it to stress.
Wow! Yes it's true that every MS has different symptoms. I'm happy you're doing well 😊
I definitely have noticed a pattern on doctors telling women it’s stress or anxiety when it clearly isn’t.
‘Stress’ heard that SO many times :(
It's so hard because it is such a simple thing to stress over things.
Hopefully GP's and specialists are getting more educated and can identify earlier :)
Yes, I'm stressed because my body is revolting. Wish I could find a good Dr. All I get is uncaring, dismissive ones.
Sincerely i was so sad when my husband was diagnosed of MS disease 2 years ago, when he was 49. He had a stooped posture, tremors, right arm does not move and also a pulsating feeling in his body. He was placed on Senemet for 8 months and then Siferol was introduced and replaced the Senemet, during this time span he was also diagnosed with dementia. He started having hallucinations, lost touch with reality. Suspecting it was the medication I took him off the Siferol (with the doctor’s knowledge) and started him on MS natural herbal formula we ordered from Dr James, his symptoms totally declined over a 3 weeks use of the Dr James HERBAL Formula or MS disease natural herbal formula. He is now almost 51 and doing very well, the disease is totally reversed! my Husband was cured and now my Husband is free from MS, i went to the hospital that said there was no cure to MS and informed them about my Husband healing and they were surprised. here is the contact email ( jamesherbalformula@gmail.com ) also reach him on hangout or through his whatsapp number via +2348102574680 Regards.
I have all symptoms of MS. I’m 19 years old. I have super bad vision problems, I’m tired 247, breathing problems, tingling fingers hands and toes. I’m so scared. I’m always dizzy and off balance always. This has been happening for a year and a half
Oh no, I'm sorry to hear that. Have you been to your doctor to get an MRI?
I had a MRI a year and a half ago, he had no idea what it was and said the findings were suggestive of Leukomilacia (at birth) or stroke at birth but I only just started expecting symptoms now. I have very bad problems driving, thinking of words and trouble explaining things as well. I can’t even drive to class anymore. I am getting a second opinion in a month! I’m praying its not MS, I hope you are doing well god bless
It sounds like you have been through alot.
I pray it is not MS as well.
I hope you find out what it is so you can be at ease and treat your symptoms. xx
Me too hun. I've had weakness, dizziness , loss of balance, heaviness of body , my vision is all jumpy and shaky
Been constant for 3 years, no meds have helped and all days are the same so I hear u
I forgot I have cog fog so problems with memory, understanding and explaining things. It also affects my mood im very irritable .
Totally can relate with being okay with needles now!
I use to have panic attacks at the thought of getting the flu shot.
Now I'm like, give me the steroids!! haha.
I hope your going okay :)
I just turned 38 Sept 1st and I live in Denver, CO, U.S. I have had some lingering health issues that started getting increasingly worse over the past few months or so. For some reason MS suddenly came to mind. I have known a few people in my life who have MS, but I really didn't know too much about the disease till recent years. I decided to start looking up the symptoms and on one list, I have 12 out of 15 symptoms! I am totally freaking out! I want to rule out other possibilities and I want to believe it's something else, but something deep down tells me, I might actually have this! 😑I have had asthma since I was 2, I struggle with obesity, I have recently developed hypertension, and vocal chord dysfunction with spasms that I was told are related to GERD. But my swallowing issues seem to be getting worse and I am wondering if there is more going on than what my ENT told me. I wanted to work on those issues and not be sick the rest of my life. I feel with MS, despite meds, you are sick the rest of your life. Because relapse can happen at anytime and be as severe as it wants to be. An open MRI is fine with me, but hell no on the spinal tap! 😮 I hope to god that they can diagnose with just an MRI. I read that not everyone will need a lumbar puncture. I know they won't put you under for that. I can handle needles in my arm, since I have had quite a few IV's in my lifetime, but I don't think I can handle one in my spine. I decided to not have kids, back in my 20's, except if I do it through adoption, so I've never experienced what an epidural feels like either. I heard it feels like fire going into your spine! So I'd imagine a spinal tap being 2 or 3x worse.
Oh God the tip of wearing comfy clothes in the MRI is great! As someone who is about to get diagnosed I am just dreading the whole process, especially the MRI, it felt so alienating honestly. So I'm gonna do that next time! Thank you
I'm immensely glad that this little advice may help. I really hope it works for you as with MS there will always be an MRI so doctor can see the progress
You are amazing for sharing your story it will certainly help people ,,, God bless you beautiful girl , thank you ❤ how are your symptoms now from you have went on medication
Im currently being assessed for MS.. They did an MRI of my spine today and waiting for results. Waiting is horrible
Scurvy! 😆 Doctors sometimes Seriously...
My. Gait. Walk. I. Have. Been arrested accused of being. Intoxicated funny but not. I don't. Drink. Not. Knowing. That it was Ms. How. Crazy. Is that. !!!!!
Oh no. That is crazy!! I totally know the feeling, but I didn't get arrested.
I hope you're going alright now.
What was the trial you were put on? Had no idea that so many prople especially young people are dealing with this and living comfortable. Thanks for sharing your story
I have balance and gait issues including tingling, memory and cognitive issues. My brain and spine scans came back all normal. What should I do? Is this MS? It feels like it is
Hi, thank you for the video - I am wondering (I’m also in Australia) do you still drive - are you allowed to drive? What’s the medication like? ✨🎀 Hope you’re having a good day!!
Thanks for the comment. I am still able to drive (thankfully) On the treatment I have not really had to change anything from my normal life before MS. Which has been absolutely amazing. I hope you have a great day as well.
You’re an angel & it’s nice to hear how you are coping & giving tips to others 💜
oh a fellow aussie i am now in sydney but lived in noosa for yonks lol love to connect anytime
Thanks for your video I was just diagnosed 2 weeks ago at age 28 with relapsing remitting MS. My mum and my brother also have MS. My brother was diagnosed 2 years ago at 32 and my Mum 10 years ago at 50. I am about to start Ocrevus. My first symptom was optic neuritis in one eye. Pain when I moved my eye and blurred vision in that eye. Thanks so much for your videos you are an inspiration. I wish you all the best. I am in Sydney Australia.
Its not genetic though
Did you get vaccinated before that ?
@@NB-vd6lm No it is not genetic. That is correct. You have about a 2% chance of developing MS if your mother has it. Even if your identical twin has it you only have about a 25%-30% chance of developing MS. So it is quite a mystery. There is no vaccination for MS.
@James Emerson so sorry about your familyHow are you guys today?
@@chinwendutony3326 Thanks, my life is almost completely normal. My doctor told me I would live a normal life because I have very mild disease. MS is like cancer in that you could can have a mild skin cancer or you could have a deadly brain tumour. My specialist said his clinic looks completely different than it did 20 years ago. No disability anymore. My mum has a bit of a weak leg and muscle spasms but she soldiers on fine. My brother has not been affected by his MS at all, like me. I am thankful and grateful.
Scurvy is a lack of vitamin C. Did you mean vertigo?
Oh my goodness!! Yes. I meant vertigo. That is crazy. Thanks for the pick up :)
@@madkbeauty No worries, wasn't being critical, just checking :-)
All good, I appreciate it. I'm going to add a note/subtitle to the video now :)
SCURVEY!?... omg is ur doctor Captain Hook? Scurvey is of course possible on land due to severe lack of Vitamin C (common to sailors cos ships carried no fruit on board so the crew were mal-nourished) -... "yo-ho-ho & a bottle of medicine"🐦
I also was diagnosed with MS and I also walk like very dizzy can you help me with that have any tips because I feel like it won’t go away
Thanks for the video... very helpful... keep up the good work
On a side note, does anyone know where we can meet other MS singles.?.. dating is hard... girls seem to run a mile when you tell them... there is such a stigma... any help would be amazing. X
Thanks :)
I think for me, with dating I find being honest is the best. When I find a partner I want to know they under stand MS but they still want to be there to support me.
Exactly man..it is soo hard to date with MS. Especially for us MEN...cz girls are always looking for a strong man who works out every day lol
It could be the stress. But i think maybe people get Ms because 2 little D vitamin in the cells. People in India and Southamerica works 12 - 16 hours a day . they stress a lot. But they don´t get MS.Maybe the sun( D vitamin) protects them from Ms ? In Scandinavia and England people get Ms a lot. Maybe lack of sun and drinking 2 much milk . did u take many antibiotics when u were younger ???
That's an interesting point. I have heard alot of different contributors. When I was younger I did take antibiotics if I was sick maybe once a year as a guess. One of the things I didn't mention in the video. I had both Glandular fever which usually caused by the Epstein-Barr virus (EBV) and shingles before I was diagnosed.
madkbeauty Sending U a big hug :)
Hi I'm writing with great difficulty but it's worth thanking you for your video, i don't have ms diagnosis, however i almost know in my gut that I do..for the past two years i had three attacks so severe that it took me weeks ro revover i used a wheelchair i couldn't eat or brush my teeth for weeks.. walking was almost impossible and so using my hands..my face was too numb to the point that breathing felt so funny...after spending a week in the hospital i was sent home with no diagnosis..since the first attack the symptoms never resolved however on ordinary days they are subtle..and during this period last thee months i had two attacks even more severe than the first one that led me to the hospital.. everything is shut down cuz of Corona virus and i really don't know what to do.. yesterday was so terrible i had my body trembling violently for hours... I'm at loss at what i should do.. I'm afraid to risk going just to be sent back home telling me it's anxiety..im in tears for how tiered I am..
I'm sorry to hear about your struggle. It sounds absolutely awful what you are going through. Is there maybe a GP that you would go to that could refer you to a hospital or specialist?
@@madkbeauty yes but not currently..i could not possibly drive with the my current wellbeing..and when I asked my dad to drive me to hospital he literally turned his back saying they are full in Corona cases and wouldn't accept me so why bother? The first episode with less milder symptoms i spent a week in the hospital and they basically gave me nothing but heavy painkillers tramadol to relieve the pain and discharge me saying i might have increased ICP but didn't confirm that..then my nueorosergon said that is possible but also didn't confirm..
Because of the Dr reactions i don't think my family is eager to help me
My head hurts so bad and im barely standing up on my feet without collapsing and still not bas enough for them!
Thanks for your reply ♥️ i wish I was in a better place to say something better
Hello, I was diagnosed with MS this month and doctors found lesions in my brain as you mentioned that after one year your MRI came out clear (no lesions) is your doctor told you that you don't have MS anymore and did doctor your disease modifying drugs?
Hello, what I meant when I said the MRI came out clear was that there was no progression. At the moment there is no known cure for MS. The treatment I am on is to stop the disease from progressing. I hope this helps.
@@madkbeauty Thanks a lot sister, please try Pranayam and Yoga it can really heal or stop progression of Multiple Sclerosis
Sincerely i was so sad when my husband was diagnosed of MS disease 2 years ago, when he was 49. He had a stooped posture, tremors, right arm does not move and also a pulsating feeling in his body. He was placed on Senemet for 8 months and then Siferol was introduced and replaced the Senemet, during this time span he was also diagnosed with dementia. He started having hallucinations, lost touch with reality. Suspecting it was the medication I took him off the Siferol (with the doctor’s knowledge) and started him on MS natural herbal formula we ordered from Dr James, his symptoms totally declined over a 3 weeks use of the Dr James HERBAL Formula or MS disease natural herbal formula. He is now almost 51 and doing very well, the disease is totally reversed! my Husband was cured and now my Husband is free from MS, i went to the hospital that said there was no cure to MS and informed them about my Husband healing and they were surprised. here is the contact email ( jamesherbalformula@gmail.com ) also reach him on hangout or through his whatsapp number via +2348102574680 Regards.
@@madkbeauty hey how are u.where u belong from?
What a lovely way to help people who are newly diagnosed. xx
Thanks, I love your channel and the idea about managing MS while travelling. xx
@@madkbeauty Thank you. I used to worry about travelling with MS but now my plan is to make the most of my life before MS gets me lol xx
How are you doing lately? Hope you are ok
I wish you well .
Thanx...strongs
What do you mean by dizziness? Like you're going to faint, or like you're rocking on a boat? I feel like I'm on a boat 24/7. Sometimes fo get on the verge of passing out.
It was the rocking on the boat. Feeling like the floor was not stable.
@@madkbeauty So what helped?
Well, that is when they gave me Methylprednisolone because the vertigo was a part of a relapse.
I feel like a half deaf drunk bambi on ice rocking on a boat that's just been hit in the face
Thank You!
Hi
Scurvy? Don't you mean vertigo?
So sorry. Thanks for letting me know. I did mean Vertigo.
@@madkbeauty No need to apologise. No worries 😊
Thanks for sharing,it's nice to see others who identify.
AJ's HR #ms #findAcure I myself have relapsing remitting ms im just trying to find people to talk 2 that can relate because honestly no one knows how it feels unless ur actually living it ...... I’ve made only one ms video hope you have time just to check it out I’m sure ur extremely busy but I’m just trying to reach out for some support.
ua-cam.com/video/9VekoY7PiGE/v-deo.html
AJ's HR #ms #findAcure I myself have relapsing remitting ms im just trying to find people to talk 2 that can relate because honestly no one knows how it feels unless ur actually living it ...... I’ve made only one ms video hope you have time just to check it out I’m sure ur extremely busy but I’m just trying to reach out for some support.
ua-cam.com/video/9VekoY7PiGE/v-deo.html
so sorry for not replying sooner. Your comment got sent to spam. I totally get where you are coming from. I am more than happy to check you video :)