Last reply 1 month ago
Sorry New to all this

Hey guys, sorry about this, I have literally not spoke to anyone about this , not family or friends cause I just don’t know what to say.. ..so I recently ended up getting diagnosed with RRMS in December just gone,
Literally in November I was out walking with my partner and hit my leg on a half wall of all things, guess I just didnt see it there, thought nothing of it went home went to work the next day. So started with the blurry vision and double vision to the point where I couldn’t move around without being clung to my fella… I slept for around 20 hours a day, wasnt eating or drinking had no energy couldn’t move and to top it off I was losing my ability to talk and move my right leg and right arm,. The hospital and eye centre just couldn’t figure it out at all,they just kept saying it was infection sleep it off etc( from November 23rd till December 16th) I even had a CT scan in a&e cause they were baffled but the doctor said then there was nothing abnormal, finally my gp took my serious and booked me in for an emergency MRI scan on the 15th December after looking at my CT scan and admitting there was something there! 17th December. My doctor called me to see him ASAP then admitted me straight to hospital from there with more MRI scans and blood tests, speech and physio therapy and steroids. Ended up there for 6days -.- we discussed treatment including ocrevus( currently off the cards as wanting a baby, but I also have PCOS) and copraxone( a possibility)
How long after diagnosis did you start a treatment??
I’m still waiting as it stands, I don’t know what to do given the current situation,
It’s been around three months and I’m almost back to normal, visions normal again, and I can walk fine on my own, still struggle with the movement of my right arm, getting a lot of brain fog and fatigue too, but then I have times like now where I’ve been awake for more than 24 hours and I’m not tired haha,
Also I need an opinion, I’ve started to have these weird episodes off lightheadedness, almost blacking out, not being able to lift my arms or legs and slurring my speech, only happened for around 30 seconds a time but it’s 4-10 times a day roughly for the past 3 weeks, it’s rather scary and again I’m not sure what to do, if others experience this or is it something else?

Thank you for taking the time to read my long post, like I say I’ve not spoke to anyone about my diagnosis
Much love to you all

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highlander
1 month ago

@jade_victoria_cantrill
Hi and welcome to the club no one really wants to be in it really but here we are….

Under your post above you’ll see some boxes relating to some of the things you mentioned.
Click on them and it’ll take you to other posts made about that subject.
Feel free to ask anything you like we’ll try and find an answer one way or another.
Above all else try and keep a sense of humour…
We’ve all been where you are one way or another, you’ll have messages of welcome soon no doubt.
Welcome again.


georgia_roberts
1 month ago

I was diagnosed in November 2019 and started treatment at the end of January x


vixen
1 month ago

Hello @jade_victoria_cantrill, welcome aboard! Must have been a shocker to receive the diagnosis. A couple of things. I don’t know your age, but clearly you’re youngish. I would say, although it’s hard, your priority needs to be on restoring your health, rather than worrying for now about babies. This diagnosis is the oppositite of a lottery win (!). They say don’t make any decisions about spending money for six months or more, because you make them based on feelings and emotions rather than being rational! Lots of women on here are mummies, but to be the best mummy you have to be in the best state of health possible. Does that make sense?

Also, the symptoms you have now might be the residual after effects of your initial relapse. I think when you are diagnoses with RRMS, you expect, as I did, that you will have a relapse, recover, then hopefully experience nothing. But, I had newish symptoms for up to a year after diagnosis, but two MRIs didn’t reveal any new lesions which really surprised me. Lots of people who are newly diagnosed preoccupy themselves with finding the ‘new normal’. It’s been three years for, and I think my new normal is to always expect the unexpected! Always keep a note of changing or new symptoms, and let your MS nurse know, if you have one.

Other than that, rest as much as possible and don’t feel guilty for it! Eat healthily and don’t smoke, whatever you do. Try to exercise within reason, ie regularly, but not knackering. There’s a huge bank of resources and experiences on this sit, sosmile and keep posting! X

Thank you guys for replying 😀
I’m gunna have to try to get hold of my MS nurse again see what the delay is with it all,
Vixen, thank you very much, I probably should have said in my post, im 26 now,
My MS nurse has supposedly contacted my neurologist to see which bhe recommends for my case, if he says ocrevus then I’ll do that and a family will have to wait for now
I’ve also come to terms with the fact that it’s not all as simple as it looks on the outside haha, I started to keep a diary especially starting with these blackout/dizziness spells I keep having to see if there is a trigger for it,

Also, I don’t push myself when I’m not feeling great, but I’m then made to feel like I’m just being lazy from particular wider family or friends,
I had to quit my job of 3 years, which I loved, because my manager didnt understand my needs and reasons for having time off, which hasn’t helped my mental health but I do try to be positive, walking the dog daily, even though it’s not far at the minute, try to do little bits when I get busts of energy,
Luckily I have a fella who’s more than willing to help me out when I need it so it makes it a little easier having someone who kinda understands me

Ooo my neurologist recomemmend I take vitamin d3, I have some 1000iu tablets but not sure on what quantities to be taking, any help?

I also take vitamin c zinc vitamin b and magnesium

Thank you for you’re help
Stay safe


lea_jeffreys
1 month ago

Hi, I also have RRMS and was diagnosed in 2009. My vitamin D level has been very low on two occasions. I was given a high strength course by my GP and now my vitamin D has reached a normal level, I was advised to take 3000 IU Vitamin D3 per day. I buy a year’s supply from Amazon.


highlander
1 month ago

@lea_jeffreys
My GP has pxd me with vit D.
Cheaper than purchasing it yourself.
I’m pxd calciD two tabs a day.


potter
1 month ago

I was taking a bicycle ride when my legs quit peddling, I could walk but I couldn’t peddle. I thought I was losing my mind so I walked it home and sold it. A few months later my arm stopped doing what I wanted it to. That is when I got in to see a neurologist, it took me 3 months to get a appointment. I went through a bunch of test and a MRI. Back to the neuro and he asked what DMT I wanted to take. I had no idea so I went home and did some research, I picked a fairly new one that my insurance would pay for. I wanted to take a DMT because I had two aunts that had MS and new a little about what they were going through. I wanted to take something to slow down this disease as much as possible. Potter


cas84
1 month ago

Keeping a diary of symptoms is a very good idea, keep doing that!

You are young, and you have plenty of time to become a mum, so if a strong treatment gets recommended take it, as said in a post somewhere above- your health at the moment is the number one priority.

After diagnosis I had steroids within three weeks, then started treatment 6 and a half weeks after the steroids. The steroids are given to bring your inflammation down, so if treatment hasn’t been started yet, it could be that they believe that your symptoms have calmed down. How vocal have you been to your MS nurses about your symptoms? You need to be keeping them in the loop if your symptoms are worsening.

I was recommended to take 5000iu daily, and to tell my siblings and their children over 15 years old, to take 2000iu daily, as now that I have MS, they are at a greater risk too, percentage wise. I take other supplements too, like you do, and that’s great. Eat clean, and your inflammation will reduce drastically, as fatty foods and sugar don’t help. Lots of fruit and veg will give you energy, as will taking an iron supplement. Try not to sleep during the day, but rest when you need to by watching something, or doing a puzzle, or listen to music. Do you meditate? If you don’t, I highly recommend that you start. It is really beneficial! As is a practice like Yoga or Pilates. Even Tai Chi…there are lots of videos on You tube which you can find and watch to get you started.

Hope that helps x


jamandbread
1 month ago

@jade_victoria_cantrill welcome aboard! I believe you are doing good postponing babies by now. You have plenty of time – you’re so young! – and it is better to learn more about your MS and yourself as an MSer. Something in your post caught my eye: you said you were awake more than 24 hours. Please don’t. It’s during our sleep that our brain gets what it needs and a complete circle lasts for 7 hours. Non MSers may find they are fine with less than these 7h, but we really need them. I sleep about 12h/day 🙂
Try to exercise too. I swim (not now due covid prevencion, I run in my corridor instead); and also practise Tai Chi and Qi Gong, very relaxing exercises which we also need.
All the best, take care xx

Thank you all for you’re advice means a lot to me,
@jamandbread I don’t mean to stay awake for that amount of time, my body just literally won’t shut off sometimes, I don’t do it a lot but it does happen and it annoys me cause no matter what I do to make myself sleepy it doesn’t work haha, I do usually find I sleep between 9 and 14 hours some days
I see a lot of people recommending yoga or tai chi etc, I’m deffo gunna have a look at doing that since I’m not getting out as much as I used to,
Thank you all take care 🙂 xx


jamandbread
1 month ago

@jade_victoria_cantrill you’re very welcome with any questions, venting or whatever 🙂
This is the place to exchange our thoughts and feelings, the doubts and good/bad news.
I would inform the Neuro about your body occasionally not shutting down for sleep. But it’s good that you normally sleep well. We really need it.
About the exercise (the relaxing one) please don’t miss this: go to youtube search, dial
“Qigong Full 20-Minute Daily Routine” and do it every night before going to sleep. Let it run once or twice, so you can pay full attention to the movements and then, do it together with the lady. You can even hear birds singing in the open nature and, believe me, it’s very effective. When you master this routine, you can search for more difficult ones. I never left this one, even when I perform the more difficult ones, this is so special that I don’t want to let it down 🙂
All the best, take care xx


melaniemann
1 month ago

@jamandbread, I would like to try Qigong as your recommendation of it sounds just what I’m looking for but which Qigong trainer on YouTube have you found to be the best as there are so many different ones doing a ‘full 20 minute daily routine?’
Many thanks


jamandbread
1 month ago

@melaniemann the routine is called “Eight pieces of silk brocade”, lasts exactly 20 minutes and 12 seconds and it’s on youtube since 2018/January/07. It is a lady performing it. I guess that with this information you’ll find the right one. The lady is dressed with black sweater and purple leggings. It’s the best routine, believe me. I’ll do it like forever 🙂
Hope you find it. I guess we can’t put youtube links here, but with the name of the routine and the details I’ve sent, you’ll find this precious one! Please tell me if you did, ok?
Take care xx


vixen
1 month ago

Hi @jamandbread, I just looked on YouTube and can’t see one that 1s 20 mins 12, but there are loads on there! I am interested to hear how you feel it benefits you, as I know people rave about it. Whenever I have tried Yoga it just doesn’t do it for me at all, and almost makes me panic. However, a few people have recommended Qigong so happy to find out more. 🙂


melaniemann
1 month ago

@vixen I found it first time of trying by copy and pasting into search engine: –
Eight pieces of silk brocade, YouTube.
The Chinese lady with short dark hair was the very first one. https://www.youtube.com/watch?v=cwlvTcWR3Gs

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