MULTIPLE SCLEROSIS Q&A | YOUNG MUM OF 2 LIVING WITH MS | SYMPTOMS, TREATMENTS, LEMTRADA & MORE
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- Опубліковано 23 сер 2024
- Hey everyone,
I get asked tonnes of questions about my disability, living with MS as a mum of two and just multiple sclerosis in general so I thought I'd answer a few questions. Please feel free to ask anything else you want to in the comments below :)
Rhian x
Video on Lemtrada - • MY TREATMENT | LEMTRAD...
#multiplesclerosis #ms
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CHANNEL MUM www.channelmum....
Hey lovelies,
I'm Rhian.
I'm a 20-something mama of two and I love baths, home decor, champagne (YUM!) and Insta stories.
I have two children. The first is my lovely Siena-Belle (Siena Isabelle, she's going to hate me when she's older) who was born in February 2016 and the second is our scrumptious little Alba Ophelia, born in July 2017. I absolutely ADORE being a mummy to two little girls.
I have an amazingly supportive partner named Steve, who, although he hates being in vlogs, supports me in everything I do and he just makes me go weak at the knees, he's my lobster!
I work in Admin in the real world but I also work as a vlogger, blogger and digital influencer and my dream is to do this full time - here's to hoping!
I'm also part of an AMAZING network of incredible Mums and Dads with Channel Mum. Check them out here / channelmum
I also help out with the closed Channel Mum Facebook Group which you can find by searching 'Channel Mum Group' on Facebook. It's a wonderful support and advice group for women and men and we talk about all things parenting and everything in between, so do come and join us.
So if you want to join me on this little journey then please do subscribe because I would love to see you again.
Thanks so much for watching as always,
love Rhian
x
Hey everyone, I hope this is interesting for you :) let me know if you have any other questions xx
Definitely interesting! I was diagnosed at 17 I’m now 23
maria lua Diet reverses and heals MS. Please see a Naturopathic doctor and/or look up diets by Roy Swank, George Jelinek, Terry Wahls.
I am 24 and was diagnosed with MS one year ago and I've been following you ever since. I think your videos are very inspirational and make me believe I can still enjoy my life despite my diagnosis. Love you lots
octavia0220 Thank you so much, you’re so right, you can enjoy life regardless of diagnosis! Well done for being so strong and pushing through, I know it’s hard sometimes ❤️ R x
I was diagnosed 16 years ago. You can do anything you want. Don't let this disease get in your way
octavia0220 I got diagnosed at 24 in 2017
@@rachelrxoxoxo1263 Sad to hear that :( Hope you are doing well. Are you on any medication?
Diet reverses and heals MS. Also consider seeing a Naturopathic doctor.
SwankMSdiet.org
Overcomingms.org
Terrywahls.com
I’ve been searching for forms, videos, group therapy for younger adult women with MS and you’ve literally helped me feel normal. I was diagnosed in 2009 I was only 17 and I have felt like I’ve lost control but watching you so happy and positive makes me see the light at the end of the tunnel 🤍
I got diagnosed at 14, I'm 30 now. I've been thinking of making a blog about my experience with it for a while now, maybe soon 😅 hope you keep well 😊
J Aims You should do it if you want to 😊 I hope you’re well too, thank you.
Rhian, I know you are probs not gonna see this but I want you to know how much this video has calm me down. I have not yet been diagnosed but I have a lot of symptoms and experiences pointing to MS. I have been crying all day at the fact I may have a chronic illness but watching this video has given me a more positive outlook and motivation on the possibility I may have it. I have not been to the neuroglosit yet since their offices have been ignoring our calls but I am sure I will see them soon.
Much love!
Hey dear how are you today?
@@chinwendutony3326 I’m doing OK! I’ve been to my neurologist, two actually, and both have said that I’m OK. I think it’s because of the fact I’m still really young and they don’t want me to know that I have a disease. They didn’t do any brain imaging except for a CTI or ct scan I think it’s called. They said they saw nothing. My symptoms have gone away for the most part, except for my tremors. I just try not to think about it as much. And when the time comes, if the time comes, I’ll be able to go to a neurologist since I have one and hopefully get a diagnosis if there’s something going on.
Happy for you.Hope it will be the same case with me❤️
But please what symptoms did you have?
@@chinwendutony3326 I hope so too. ❤️❤️❤️
Thanks for sharing! I was diagnosed earlier this year and completed my first round of Lemtrada a few weeks ago. I find your positivity really inspiring, especially around how you deal with the uncertainty of the disease which is something that I struggle with.
Carly M I’m sorry to hear you have been diagnosed too, it’s not nice for anyone to go through ❤️ Don’t get me wrong, I do have bad days but I try to remind myself to be grateful for what I have and for the fact I’ve been relatively lucky in terms of disease progression so far. I also try to remember that whatever I’m worried about happening, might never happen, so I’d be worrying for nothing. I guess I’m just a ‘cross that bridge when I come to it’ kind of person. Xx
I had MS for 5 years before I had got pregnant. Got off betaseron before try to conceive I had an exacerbation. Took 6 months to conceive. But during pregnancy I felt wonderful! I had a long labour and had epidural. I did NOT have an exacerbation after labour. Stayed off medicine for 4 years and had another baby and did wonderful. Thank you for sharing! I am scared to take some medications. Currently the doc prescribed me copaxone injections. I was on rebif for 7 years
Love watching you rhian, I hope you continue to stay as well as possible, I lost 2 sons then my mum then was diagnosed with severe osteoarthritis, as you say we have to adjust and no our limitations. take care much love to you all ...... Shirley xxx
shirley douglas Oh Shirley, I’m so sorry, that is so much for one person to deal with ❤️ thank you, I feel great (if a little broken sometimes) at the moment and I always TRY to keep positive - it’s all you can do really 🙂 x
Máme ji už přes 17 let a stále bojujeme!!!thenks
zůstaň silný ❤️ omluvte můj překlad. Google Translate je můj přítel ❤️❤️
Rhian, you look gorgeous xx Thank you for sharing, a lot of this really spoke to me. 💕
Lisa Dixon Thanks Lisa! I hope you’re doing well lovely x
Digital alcer, and ANS+ve
Lungs fibrosis how to take care and natural remidies
Did you need a lumbar puncture to diagnose MS? My doctor has the MRI showing 2 lesions in my brain and I have a bunch of symptoms that point to MS. He wants a lumbar puncture but I don't like the risks associated with it.
Thanks for this very interesting!
So positive ❤️ thank you xo
Hellooo Rhian hope youre well.
I enjoyed watching your videos. Thanks for the knowledge in understanding Lemtrada.
Turns out. I have got Active Liesions. I need to take Lemtrada next month.
I wanted to ask. How are you doing? Have you had any random issues etc pop up?
It has been a while since taking Lemtrada for yourself. How long until we can get on a plane? Also, how long is adviced until you can smoke (take a few puffs). This seems to help me ALOT.
I should really try getting another MRI scan before taking Lemtrada.
Hope the question is okay.
Thank you.
Thank you for sharing! You have such a wonderful head on your shoulders! ❤️🧡💛❤️🧡💛❤️🧡💛
Summer Morrison Thank you, Summer 🙂 we all have bad days but I definitely find that having a positive mindset helps a lot x
Please do the symptoms. Thanks
Danyelle Jones Planned in for the next few weeks - thank you 🙂
Lovely video beautiful mummy x
Carly Benarbia Thank you Carly 🙂 x
Is Ms the same as connection tissuedisease
Hi Dear dear Rhian, have you considered moving to a country closer to the equator, for your kids?
Would that help the MS?
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?
Did you ever find out what was wrong as I have all these symptoms as well x
@@taniastevens7129 unfortunately not! :( I have another appt with my a neurologist in August. He keeps pushing migraine/ depression meds on
me. I've been feeling okay the last couple month's but I'm always on edge because I know my symptoms will pop back up anytime as they always do. What's your age and how long have you been feeling unwell? ❤
@@gabriellemasinas9984 I’m 31 like you I had mono when I was a teenager, have dry eye so bad my tears burn my eyes when I cry or if they water and they are always bloodshot, I have joint pain and tremors, numbness in feet hands and my arms feel pins and needles as do my legs and they feel really heavy and weighted.. my face today is numb and my cheek has a tremir today. Swallowing is really scary sometimes I just can’t and I have the black dot in my vision as well Again my white blood cells are always elevated and blood tests have all come back fine. I have been to the emergency room so many times they told me not to come back and speak to my dr who is useless. I paid to see a private neurologist who was concerned I had brisk reflexes so I’m awaiting a mri scan. I’m sorry you still have no answers yet
@@taniastevens7129 wow, it's so crazy how a lot of us are the same! For years I felt alone thinking I was the only one who felt like this. I'm glad I'm not. Is your MRI already scheduled? Please keep me updated, I would love to know what your Dr thinks as we're all looking for answers. I hope you get help and answers soon! If the neurologist is no help I'd recommend seeing an endocrinologist which is also my next step, but will dig deep for autoimmune diseases. Hugs! ❤
@@gabriellemasinas9984 hi yes I couldn’t believe it when reading your first post just how many symptoms we shared. Yes I got mri for the 13th July as soon as I have results I let you know… oh really a endocrinologist is that for hormones etc?
Hi there, you cope so well with this. Would you ever consider HSCT?
Helen P I’m honestly not sure where I stand with that because I’ve already had Lemtrada. I think personally I put my trust in my Neurologist that he was recommending the most suitable treatment with Lem so if he recommended something now because I was having issues, I’d probably go for it 🙂
So does walking down a slope throw you off and make you feel a little off balance, or specifically what does walking down a slope do? Also what happened during the episodes where you could not walk? What symptoms did you have that prevented you from walking such as weakness, or possibly muscle spasms or dizziness?
I feel off balance constantly when I’m standing, just a little dizzy and as though I might fall. A gentle slope would be fine but escalators or stairs make me very dizzy and I can lose balance easily.
When I couldn’t walk, the best way I can explain it is that I felt like my hips and legs were fighting against me and I just couldn’t make my brain connect with my legs to make them walk. Difficult to explain, there were no symptoms, I simply couldn’t walk and I felt pins and needles up and down my legs.
I hope that helps 🙂
@@rhiangibson1544 thank you!! I had an episode last summer where my knee froze and was stuck straight. I had a triangular area over the top of my knee up the side of my leg to my hip that was numb. The muscle spasms were very painful. Apparently there was pressure to a nerve in my thigh causing the numbness, and for some reason my knee cap was out of alignment along with an alleged knee infection etc. After all of this walking down a slope completely throws me off!! Multiple other symptoms. When I stood up my legs would stiffen and sometimes spasm. I am finally able to stand up more easily and normal. I do have a Neurology referral but I had to go for other treatments and was too busy. Sorry again, TMI. It is just that something is not right and my Primary care doctor treats me like I am putting on an act or something, even making a statement "Are you text book?" whatever that is supposed to mean... No I've never gone to a doctor unless I was sick or something was seriously wrong. It just gets too expensive to go to the doctor when they won't listen or do anything. And the referral to a Neurologist came from a Hospitalist not my primary doctor.
Thanks for this very interesting!
Pillar Family Thank you lovely x