Multiple Sclerosis Symptoms Then vs. Now I Pre Diagnosis and Post Diagnosis
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- Опубліковано 10 тра 2022
- Hello my loves, in this video I walk you through my Multiple Sclerosis journey and the symptoms I have experienced pre and post diagnosis. It has been a long road, but I am so grateful for where I am now with my health. I wish you nothing but healing!
Instagram: / becca.is.love
Podcast: ceremonyoflove.podbean.com
As someone who’s 31 just now getting diagnosed with MS I realized I’ve had symptoms for yearssssss and didn’t even know it until the inflammation started ramping up! It’s still manageable but definitely uncomfortable, I’m getting ready for my first treatment which sounds like it’ll be infusion, this video was very helpful! Thank you so much for sharing your story with us! I hope there’s more to come! :)
Aww thank you for such a kind comment. I truly appreciate it so much. Yes, it is crazy to realise how long symptoms have been there for before diagnosis!!
Keep fighting the good fight ! I was diagnosed in 2020. It’s a day to day struggle but, it has inspired me to start my own channel about my life with MS. Best wishes and stay strong
I am so glad that it has led you to this creative pursuit!
Hi Rebecca- glad to hear about your journey thus far:) I am 54 and recently diagnosed and on Kesimpta doing well. I feel like , wow, so this just happened! I am doing yoga, faith in God helps a lot, low stress & a great family!! I am shocked how young this affects people. I really feel like my life worked out & have so much empathy for folks not doing well. Happy to hear you positivity. Any MS related info you want to do is great. Love from the US (Colorado)
Thank you so much for your response. It means the world to me. It sounds like you have a lot of support from your family and spirituality - which is so wonderful and necessary xxx
@colleensmith3374 im currently just start Kesimpta should have my second monthly shot but how has it helped you... I wanted to do ocrevus but the guy who works with my neurologist was trash and took weeks to send in my paperwork but glad to hear your doing well hope i can say the same
You're an incredibly brave person, I hope you're still doing great in this journey :)
What a lovely comment! Thank you so much ❤️❤️
Thank you Rebecca, just found you, today. Shocked me really, you been soo young. 😢Keep doing what you are doing, you look amazing. I have been living with it for over 10 yrs.now.Its still a struggle, but I must remind myself of people, who are sooo much worse. Sending you Love and hugs, from Evelyn in Ireland 💚🇮🇪
Wow! I hope to visit Ireland one day
Hello ive only just fount your channel and subscribed! ❤ i went in hopsital this june for just over 2 weeks with a few symptoms like falling to my left, dizziness, drunk feeling it was horrible. Then half my mouth went numb 3rd june which isnt better even now :( its been such a hard journey getting people to actually believe me (in hospital) i was up there every day for 6 days in a week, waiting between 12/15 hours at a time to be seen and then turned away saying im basically faking it. It wasnt until they actually admitted me and took me for a MRI (without contrast) and told me i had 2 leisons on the brain. I had SO many symptoms. Double vision, loss of coordination, foot drop, couldnt walk, dizziness, pressure headaches on the back of my brain, the list goes on. They told me i had MS, but couldnt diagnose me without my lumbar puncture results. Well, i got them back a few days ago and got diagnosed with MS from my MS nurse last month. Throughout all of this (my first ever attack) about a month ago fount out im pregnant with my 4th child (will be my 3rd living child) and i cannot tell you how scared i am for after the babies here. I am terrified of what my symptoms of my daily life will be with MS. I never had anything before this year in may before my attack, that was going on, i was totally normal. So im scared what i will go back too as pregnancy makes people with MS feel their best. And i certainly dont. So if im any worse than i am now, i dont know what ill do. Im so afraid. Im 28 years old, my oldest is 12, youngest is 3. And 17 weeks pregnant. I am terrified. Of everything!
Have you been on copaxone? They want me to try it in december ill be 31 weeks pregnant at that time and i am so scared.
Thank you once again for your video it makes a whole lot of difference xxx
I am so sorry to hear this but thank you for sharing your story with me. I think it is very sad that they thought you were faking it. To be honest, there are so many stories about women not getting the help that they need because the medical industry doesn't believe women's symptoms and women's pain :( It is amazing that you are pregnant with your 4th! Incredible. I know that it is scary but just keep preserving. I also suggest getting a support group
@CharlHeartzChu let me know how everything goes!
Thank you for sharing your journey. I'm about to start my Ocrevus infusions.
Good luck! Sending love and strength xxx
I'm in an Ocrevus trial, all good so far! Nice video btw. Keep it going!
Thank you so much!! good luck xx
oh, please tell more.
@@merlelybird2726 well, I'm in a trial that is comparing the approved (600mg) dose VS a (1200mg) double dose. Since it's a blind trial, I don't know which dose I'm actually taking. Before starting the trial I was deterioting by the day, ever since I started the meds regardless of either doses, I've definitely seen improvements. I've gained back all the weight I've lossed post diagnosis so back to a healthy state. I still get random symptoms every now and then, and fatigue. There's a thing called the ocrevus crap gap and it's usually the last 1 or 2 months before the next infusion. You can always ask your doctor to switch from 6 to 5 months, but as with everything it comes with risk.
Hope you have a good journey warrior! Stay blessed 🙌
Thanks so much for sharing. I can totally relate to your story. I have MS and chronic fatigue is definitely the most persistent symptom! Some days are better than others. But a super busy day, if I overdo it, there will be a price to pay. I’m also on Ocrevus and took Tecfidera before that. And I took an injectable for about three weeks before Tecfidera and yes, only three weeks because it exacerbated some symptoms that forced me to beg my doctor to explain and he said stop!! I look forward to hearing more about your wholistic approach.
I find those injections so scary, I’m really glad I didn’t have to do that. So good that you’re off them and had the help of your doctor to make that decision! Chronic fatigue is super intense, I’m going to continue looking for things that help so that we can all hopefully feel a little better. Totally relate to you on the busy day too, we have to really pace ourselves or it can have such negative affects 😢
Loved listening to your talk, see you soon I hope. My brain fog is the worst symptom for me , love to know what you do to help ease it. Thank ❤❤❤ you and good luck.
Thank you so much for the kind words ❤️ yes, brain fog is honestly such a battle!!
Strength Training and Lifting weights helped my back.
Yes! I’ve been doing that too recently, so helpful
I’m on ocrevus,I’m feeling more tired than before. My 1st med was Copaxone and it made me feel better but injected spot was not doing good. 2nd was Tecfidera and that kind of made me feel super sick and my lesions were multiplying and had lots of falling. Then I stopped all and followed Dr Graham book and did lot better but in mornings started walking like a robot and urinating a lot and not sleeping, so now I started the infusion.
I wish you the best of luck on O xxx
Such a helpful inspirational video. I was diagnosed age 52 with RRMS and also on Ocrevus.
Looking back I feel I’ve had MS for years with lots of symptoms along the way! I’ve been hairdressing for 30 years so used to back ache and weird feeling just thought it was related to being super busy and standing for hours.
Great to hear your journey and positivity. Would love to know of stretching techniques and holistic therapy you use. I know physical activity really helps and hit the gym regularly. Look forward to more news from you 🧡
Thank you so much for your thoughtful response. I will definitely make a video about alternative therapies and stretching!
Thank you, my daughter is having weared symptoms, your video is so helpful
So glad that i could be of help xx
Thank you, lovey video.
Such a pleasure xx
I am from New York City, it in Brazil, and set to begin the same DMT.
I was diagnosed on my 50th birthday, one year ago.
I live in Brazil and the world stopped here too.
Every case is individual, so it's almost like ones advice doesn't really work for others. Except really common things, of course, like avoiding heat (look up "Uhthoff's phenomenon").
Wait, you were only 13?! OMG! I know MS often hits young people, but this is terrible.
I'm sorry, but... it's almost like I feel lucky - MS really struck me only when I was almost 40. MS was at first showing like problems with balance, I thought nothing of it, seemed like I just need more rest and sleep. That was years before first obvious crisis, when my arms got insanely weak, then I recovered, and 3 years later I started to limp and again hands got weak and tingly, at which point MS was diagnosed. I steadily got worse throughout whole 2022, but there was no clear moment of crisis like in late 2016 and 2019. On contrary - MRI shows, here might be remielinisation taking place in some places of my damaged spinal cord - some nerves are recovering, yet I'm getting worse and walking is really challenging lately. The best guess by my doctor is - that 2019 damage around my neck area was so extensive, some atrophy of isolated nerves is still going on even 3,5 years later.
P.S. I guess finding out in mid September 2021 about the death of my first girlfriend also might have affected my condition. We parted our ways over 20 years ago (no tragedy or fighting, our feelings just were not mutual), but I also got ADHD, which means my emotions are much more intense than those of so called "normal people" and they do not really fade with time.
Thank you for your story! I am leaving for my MRI in 1 hour. I have been concerned because it is WITHOUT contrast. I am almost blind in my right eye and left eye seeing "heatwaves", numbness in cheek, arm hand, leg. My balance is horribly off, I fall often even using a cane. I have vertigo, my ears are ringing horrible pain behind my eyes (like brain freeze from ice cream) and brain fog 70% of the time. Maybe my concerns are too early and the MRI without contrast will show something we can start treating. I just cannot understand why without contrast would be the go-to imaging choice with the symptoms I have. This has been going on for MANY years. Dr's keep telling me it is stress and or anxiety. I will never accept that as a diagnosis for what I am going through.
I am so sorry! I highly recommend finding a neurologist who will use contrast because this will tell them whether you have lesions in your brain or spinal chord!! Very important
Any update? How you doing ?
@@haninshuaib7289 They did find a tumor in my eye and pretty sure it is not melanoma. It is leaking and so far hey haven't stopped it so I have a huge fluid pocket distorting my vision. hey are talking about doing a TTT to stop it.. The MRI did not show much, a few small white matter lesions. They refused to do a MRI with contrast. I still have vertigo and balance issues, really nothing has changed, they still dont know what is causing my symptoms but I am denied a Neurologist because there is not one on the indigent care program's network i am on. I am still waiting on my disability benefits, then I will have Medicaid and better Dr. hopefully.
Would love to hear about spirituality!
Ah thank you! xx
I am fit, work out all the time, and am a vegan.
They saw lesions on my brain without contrast.
Now I need an mri with dye to see more details.
@@mistycross3844 Yes, it is normal for them to use the dye :-) good luck
I am 50 and was diagnosed with the same symptoms, I was just diagnosed last year.
My doctor has prescribed the same medication and I'm waiting to begin taking it now, but my symptoms are very light because I'm a vegan.
Cool
Best of luck :-)
You don't bore me. The diagnosis story is long for anyone that has MS.
Yes, everyone's story is going to be long and filled with their own unique challenges 🙂
Me too.
Provigil was helpful for me.
Yay! I am so glad you found something that worked 🙂
Ocherous is amazing.
Can you please write out the name of your medication.
Thanks
Ocrevus xx
I love you
Thank you 🙂
Ocervocus I Magog.
Could you share what you eat??
Sure
My symptoms are crazy, and I can't imagine going through this not being a vegan
Shame xx
Couldn't imagine MS and grad school.
It is super tough to be honest
@@rebeccashain It is!
@@BernardAsagai ❤
If I did not have an MS specialist I don't know what I would do.
Sensitive now to temperature
Fatigue stopped when I went vegan.
So true!
@@BernardAsagai Yes, temperature makes a huge difference especially the heat
@@BernardAsagai Ah, that is great!
im 61 and getting alot worse in final stage
I am so sorry to hear that :(
Don't say that Georgie...make that final stage 25 years
Vitamin D helps
Thank you so much 🙂
I stoppedt only because of covid.
I think the cure is stem cell transplant but too cost
Yeah and I don’t think I’d do it at least not right now with wanting to have babies etc.
Especially since also my disease is quite manageable on the medication. However it’s amazing if it works for other people with MS
SYMTOMS GET WORSE AS U AGE AND THEY COME BACK WORSE
That’s what I’m scared for 😭
Ur beautiful
Thank you
This was also very very good to listen to. I have learnt so much tonight from your Chanel. I don’t feel so alone anymore. My fatigue is horrible, I can’t think straight, my memory is shot, my depression is so sever, the pain in my lower back is so crippling, my numb limbs + pins & needles are a pain & feels horrible… to many things to list here. I’m getting a MRI soon 🙌🏼 You are so inspiring 🩷🧚🏼♀️🩷
Good luck with the MRI! I’ve found that taking 5HTP has really been helping me with depression and energy levels because it puts you in a deeper sleep at night which is super helpful for the fatigue in the day