@dizzylizzy

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dizzylizzy

Newly diagnosed

Hey, So I've recently been diagnosed with rrms, after a year of numbness and pins and needles down my left side, optical neuritis in my left a number of times and awful fatique, I finally got my ms diagnosis in January (happy new year to me). I'm due to start treatment soon which is ocervus (not sure I spelt that right) and I have have a lovely ms nurse who has told me all I need to know, but I was just wondering if anyone is on this treatment and how they are finding it? I'm not going to lie, this has knocked me and I almost feel like it's not real and I feel like I wanna to bury my head in the sand, but noticing how my body is etc and being a mummy to two gorgeous boys, I just want to know how people deal with being newly diagnosed. Especially as I was told most last year that it wouldn't be ms and it's likely just me in my head! Love one slightly overwhelmed and worried gal x

tal0031a

@tal0031a

Takes time. It hit me hard too, it took me a good year to feel better. The thing I found most helpful was to talk about it. I don’t know what kind of treatment you will get. I was put on Tecfidera and it took 6 months for the meds to fully kick in. You will have to re learn how your body reacts and make changes.supplement vitaminD 4000iud, get lots of sleep, dont get stressed out, Eat red meat at most once a week, get some counseling, eat as healthy as you can, be active as you can, find something you enjoy to do, get a cooling vest so your eyes don’t get blurry, if u are on Tecfidera get baby aspirin and ice pack that can wrap around ur neck. After you figure out your new body it’s not too bad, more annoying than anything.

dizzylizzy

@dizzylizzy

Hey, Thank you for your advice, the treatment I'm going on is an infusion one every 6 months. I think the hardest part is getting used to my body, I'm used to going 100 miles an hour haha, but I'm sure I will get used to it. Never thought about a cooling vest so definitely will give that a try. Thank you though, it is nice knowing that it's ok to not feel great with the news, I still feel like it's not real, it's a weird feeling. X

Hayley_Norton

@Hayley_Norton

Hi @dizzylizzy so sorry to hear of your diagnosis, I've been in limbo for a year now. I just wondered if you have lesions or was it the lp or nerve conduction test that diagnosed it for you. Many thanks from Hayley x

dizzylizzy

@dizzylizzy

Hi Hayley, It took a year and it started with my pain in my eye and head on the left side, I was told I had optical neuritis, they did a lp and a scan in April last year but didn't see anything. But because I was also having other symptoms I was referred to a neurologist, he put me in some medication to help with my nerve pain but it didn't help much so he sent me for another scan in October and that's when they found the lesions on my brain, I'm also under a specialist about my eye as that's also showing quite significant damage from the neuritis. I hope you get sorted soon my lovely x

JuliaM58

@JuliaM58

If I were you I would look into HSCT by joining the U.K. HSCT group on Facebook. It has an 80% chance of stopping further progression, unlike the DMDs which just slows it down. Also the earlier it’s done the better the chance of stopping progression and in a lot of cases showing damage improvement. Don’t bother asking your neurologist or ms nurse about it, most of them know very, very little about it!

lukezni

@lukezni

Hey I'm currently on Ocrevus and so far it's been really good for me. It is a stressful time during the build up to your first infusion but you are well looked after and monitored during it! I've had no reactions or much side effects after it. A little tired with tired legs but nothing that stops me from going on with my day as normal. Good luck 💪🏻 @dizzylizzy

Vixen

@Vixen

Hey, and hello @dizzylizzy. Firstly, you're in the best hands being started on Ocrevus. It's only recently been approved in the UK and the feedback from here and others I know is that there are minimal/no side effects. Yes, getting a diagnosis is massive and would say it takes most people up to a year to get used to the idea, and to think about what, or if changes need to be made. My advice would be to eat healthily (there are lots of MS-related diets that some people follow - Swank, OMS etc). Try to keep exercise up but listen to your body. It's easy when diagnosed to push yourself to 'prove you can still do it' but ultimately, the best thing is to develop a routine that reflects your abilities. Don't smoke, rest lots, and be really kind to yourself. Lots of people, myself included when I was diagnosed three years ago, is to try to understand 'the new normal.' It's hard when you've lived your life being you, and then suddenly, you're a whole different person So everyone on this site will understand how you are feeling right now. Also, I'd say don't rush to make any decisions. In my case, when I look back, the first year for me was spent recovering (physically, building up, emotionally) and the second year was spent with what I'd call restructuring. During this year, I gave up working full time and moved from London just up the road from you to York. I still have MS, it's still very annoying, I still take medication, but I have a happy life. Be strong and keep a smile on your face. You're now an MS Warrior! x

dizzylizzy

@dizzylizzy

Thanks guys, it's been lovely hearing all the advice and stories, has made me feel a little better. I know I will have up and down day and i know will take time but you guys given me good advice so I feel like I will kick ms butt. Im already doing a lot the stuff you mentioned, I play netball and I love it but do find I struggle, I try to eat healthy. My only downside is I do smoke (not a lot) but this will be my next battle to quit. So thank you my ms family 😁🥰

ItsMewithMS

@ItsMewithMS

I just went back and picked up what I just posted to another note ;-0 The correct Spelling is Ocrevus so I will try to add that tag to your post so you can just click on it and see other posts regarding it...if that doesn't work you can put it in the little magnifying glass icon in the upper left.. I will also add another link to a Dr Boster video that is a message to the newly diagnosed which may help ;-) welcome- here you are in good company- https://www.youtube.com/watch?v=wvQXygHtYzc&t=78s Hi- if you click on the Ocrevus tag below your post you can see other discussions on this DMT. It seems to be the “up and coming” DMT of choice. In one of Dr Boster’s video segments he mentioned that it is the most prescribed new DMT which really surprised me as it is crazy expensive and relatively new. I started it last fall – I was Dx in 2005 and was on Copaxone for 11 years and then Rebif for like 6. Dr Boster has so many good videos out there and has one on about every DMT so I encourage you to check them out but this one compares them: https://themswire.com/making-the-right-ms-medication-decison-dmt/ This is decision aid by the MS Society: https://mssociety.ca/research-news/article/developing-and-testing-an-interactive-online-patient-decision-aid-to-assist-those-newly-diagnosed-with-relapsing-remitting-multiple-sclerosis I also like this compare: https://multiplesclerosis.net/treatment/comparison-reviews-of-drug-efficacy-safety/ As for my experience during the first infusion I did develop a slight blush on my cheek and an earlobe turned red. This was enough for them to halt the infusion and push more benedryl type stuff before they resumed. Regardless I stayed pretty alert/active during the entire process and worked on my laptop on some photo editing. I was glad I asked for the infusion line to be set in my left arm ;-0 In my second infusion there was no reaction or isssues. Since there were no issues I don’t need a “chaperone” in my first full infusion mid April. The night after the infusion I didn’t sleep that well but I think that is because I sat around more that day than typical. In the days following the infusion I seemed kind of “bouncy” like gravity had lessened it’s hold on me ;-0 That is a good thing but put me a bit off balance. By a week after I was at least “my usual self”. After that I feel that I had some improvements especially in bowel/bladder and some in mobility. I had been having some blurry vision my my left eye (my newest symptom) which has now gone away. Overall I am feeling good and feel I have improved and am looking forward to my first full infusion in just over a month. I don’t know that it really improves one’s condition. In my logic it may hold the disease back from causing more harm and allows our body to catch up and rewire without more hits so we can see improvements. How much you improve may be dependent on how adept your system is at doing that and/or the size and location of your existing lesions. I hope that helps 😉 for me it has been positive and while I was resistant to the whole scary infusion thing before it is so nice not to have to self-inject 3 nights a week…I didn’t realize how much I didn’t like that… Good luck! Check in with the site as to your decision and how it plays out…we are all here to learn from each other and share 😉

Hayley_Norton

@Hayley_Norton

Hi @dizzylizzy thanks so much for your reply! I'm so desperate atm I just don't know where else to turn. Thanks xx

DominicS

@DominicS

Hi. Good hard. To be expected. I am on ocrelizumab. It is my 4th DMT and the best tolerated one for. It is one of the top tier for efficacy. Use the magnifying glass on the top left to search for ocrelizumab or Ocrevus. There is a ton of stuff.

dizzylizzy

@dizzylizzy

Hey Hayley, Really sorry to hear that your having such a tough time, I was the same for most last year I even started to think maybe it was all in my head, especially when the first lot tests didn't really show anything but I was still having all the symptoms. I'm just glad I was referred for more tests that finally caught it. Keep your chin up and keep going, maybe you could ask to have more tests again or something. Hope you get some answers soon x

A_Girls_Gotta_Eat

@A_Girls_Gotta_Eat

Hello ! Just wanted to say it’s crazy bc I’ve been diagnosed with RRMS and literally presented the exact same symptoms ! I’m currently on cladribine! I’m a student and sometimes burying my head in the sand is all I do and most of the time people won’t understand ! But the great thing is they don’t need to ! Just make sure to listen to your body and don’t try and fight against what it’s trying to tell you because it will only make you feel worse! As for your children on days where you feel under the weather maybe try activities that are relaxing to your body like painting or something that you can do easily !

Hayley_Norton

@Hayley_Norton

Thanks @dizzylizzy. No one seems to put all my conditions and symptoms together. Don't get me wrong I don't want ms I just want an explanation as to why I feel this ill every day. I'm pleased your getting help and hope the right treatment will improve things for you xx

chezy17

@chezy17

Hi @hayley_norton First of all breathe and take the time to take it in, you're out of limbo now which to me was the worst bit. I was diagnosed almost four years ago, for me, I said from the get go I'm still me and I'm still going to live my life. My children are what drive me to keep going, they're my biggest supporters in all of this. That and a good circle of family and friends 😊. Find out what works for you but don't for one second think that your life is done. I was honest with the munchkins and the days where I feel so tired, we have a film and comp day. Which is fine, helps me recharge and its good for them to rest aswell. You've got this momma bear 😊!

chezy17

@chezy17

Sorry @dizzylizzy man I should drink my ☕ this morning 😂😂

dizzylizzy

@dizzylizzy

@chezy17 haha thank you, yes it does feel good to know mom not going crazy just getting use to things that dont have to change. My boys are my everything, I have spoken to my eldest one as he is very aware mummy been poorly but my youngest is to young to notice. I will get there and i certainly won't let it beat me lol. Thank you for your kind words though xx

Eileenp

@Eileenp

I just had a MRI last week of brain and spine. Last 2 years I've been dealing with worsening symptoms. Chronic back pain, fatigue, pins and needles in legs and feet, loss of balance. This past summer I lost my plumbing, had to catheter. Frequent urination or I cant empty. Seen spine specialist in past. Been told it's a pinched nerve or bulged disc. Waiting on test results.

Nat1988

@Nat1988

Hi dizzy lizzy I was only recently diagnosed during lockdown this year I’m still slowly adjusting it has been hard as I’ve had to rest more and listen to my body where as before I could run here there everywhere it’s great I have had some great support from the ppl on here thank god for shift ms otherwise I would feel so alone as don’t have any family with ms I’m also in the uk 32 years old and I have 2 sons aged 13 yrs and six years and they have had to adjust to mum not having much energy as I used to which sucks but still I ding my feet with it all and with the support of this site along the way I will find a way through all the best anyway chat to me anytime as a young mum going through it I completely understand it had turned my life upside down when I woke up one day with the symptoms never thought would be ms 😁

dizzylizzy

@dizzylizzy

@eileenp I'm sorry to hear your going through what sounds like a very tough time, I hope you get results back soon so they can get you sorted my lovely. Stay strong 💪 @nat1988 welcome to the club I guess Hun, sounds like you have had a pretty crappy year like me, I was also diagnosed this year, in January, due to the pandemic I couldn't start my treatment straight away, I was originally meant to be on ocrevus but due to covid I was out on tysybri instead, so I have a trio to the hospital for an infusion every 4 weeks, it's not to bad, it's tires me out after and I sometimes feel sick but I've just had my 9th infusion last week and it's slowly getting better. I still get pins and needles and awful head and eye pain from my neuritis, but guess it will take time for me to feel more 'normal'. I get what you mean about having to adjust, I have had to do the same and realizing I can't do everything has been a tough pill to swallow, but like you I have good support. I also have two boys one is 5 and the other is 3, my 5 year old is quite sensitive and knew that something wasn't right with me so I was just honest and told him what I had and what my body is doing, like a champ he had handled it well. He knows he can ask me anything. I'm always here to chat if you have any questions about your ms or treatment or even just someone to moan to. I will be honest I haven't been on here for a long time as I kind of stuck my head in sand about it all, not great I know, but I'm trying to be more accepting of it now. Hope your both taking care and staying safe x

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dsaikia

@dsaikia

@dizzylizzy, How was your numbness and tingling feeling initial one year, is it progressing and constant for long duration or last for one few seconds? What other symptoms your are facing that time?

dizzylizzy

@dizzylizzy

@dsaikia the numbness and tingling started in my arms and initially just in the morning. However now I have them in my arms, hands, legs and feet and tbh it it a majority of the time now. So I kind of have to just try get on with things best I can x

dizzylizzy

@dizzylizzy

@dsaikia hello. My tingling is very similar to you, I started getting pins and needles in my arms and it was when I woke up in the mornings, around the same time I developed optical neuritis, but I never connected the two as I didn't know anything about ms. It wasn't until I ended up in hospital with the neuritis that they started asking me about tingling etc. That's when I realized it was all connected. Unfortunately I now get tingling in hands, arms, legs and feet and I also get numbness in my feet which had led to a couple falls. I take nortriptyline at night, which helps a little bit not much so just try to get in with it. I still get a very painful eye and bad headaches with it, it's like a constant dull ache in and behind my eye and sometimes my vision still blurs. But I'm due another scan in December so will hopefully find out more then x

dsaikia

@dsaikia

Did your first MRI did not show any lesion in brain and spine?

dizzylizzy

@dizzylizzy

My first MRI didn't and neither did my lumbar puncture. But my second MRI did show up lesions on my brain and there was damage on my optic nerve

dsaikia

@dsaikia

@dizzylizzy What is the duration of two MRIs? Did symptoms progressed after the first MRI?

dizzylizzy

@dizzylizzy

I was having symptoms for quite a while before having any tests, it wasn't until the problem with my eye happened that the docs started looking into ms, that was also when all my other symptoms helped with diagnosis, because at the time I wasn't connecting any of the issues with my eye as I didn't know about ms. While being in hospital due to my eye that's when they did the lb and scan but like said it didn't show. But the neurologist still wanted to see me as I was having all these other symptoms which were not easing up, had the second scan and bingo got ms. I still have symptoms now, pins and needles most days,but severity varies and I have awful fatigue but worse is probably the head and eye pain that I still get 🥺 but on treatment so give it time hopefully things will ease. What's happening with you then?

dsaikia

@dsaikia

@dizzylizzy I have intermittent thigh numbness which I feel when I stand up for long duration only. few times I feel thumb numbness while I was sleeping at night. I did brain and spine MRI 10 months ago, which came normal. Still in limbo.