Last reply 1 month ago
Newbie here!

Hi, I’m Sofia and I was literally diagnosed last week after suffering very mild symptoms here and there since January 2019 which were overlooked, belittled and misdiagnosed. Unfortunately I ended up going into a massive episode (I still don’t know lingo) and i woke up one morning not being able to walk or even being able to pick up my phone to call someone for help. I’m not on any treatment yet as I’m still interim waiting to be seen by out patient teams. There’s so much I don’t know and so much I’m going to have to learn to best prepare me for navigating my life going forward.

Im hoping I’ll be able to meet people and build meaningful relationships that’ll help me in my new life!!!

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highlander
1 month ago

@sdkpi
Hi Sofia.
Welcome to the club..
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.
You’ll soon pick up the lingo so don’t worry about that.
You don’t have to learn it all in one day…
Just ask.. above all else, keep a sense of humour it ain’t all doom and gloom.
Welcome again πŸ˜„
I’m sure you’ll get a few more hello’s soon from others.


vixen
1 month ago

Hello @sdkpi and welcome to Shift! So, that’s good you’re in London as you have great hospitals at your disposal; which are you with? Sorry that you’re so young and dealing with this, fresh on the tails of Covid. This has caused a backlog and delays in out patient treatment and getting advice on DMDs. Let me tell you that for most people, it can take up to a year to fully absorb and get used to what ‘the new normal’ looks like. Having a diagnosis may alter your path a bit, but always set your sights on what you want, even if that might seem impossible. You are young, and the rate at which research and medication is gaining pace has really sped up in the last 10 years. Treatments exist now for all forms of MS, some of which weren’t even licenced 5 years ago. So, avoid googling and always stick to registered sites like this, MS Society/Trust. Take really good care of yourself; good diet, exercise (but don’t overdo) and don’t smoke. Stress in all its forms has a real impact on diagnosed folk, so we have to learn to fine balance. You may be OK, but lots of us get really affected by heat, such as is today, or by taking hot baths/showers. Anyway, post any questions, you are in good company here πŸ™‚ x


amysimpson
1 month ago

Welcome to the Team Sofia – We are all in it together here, and it’s a safe place. We will all be your Moon in times of darkness and all be your Sun to brighten your day. You will be surprised how strong and capable you actually are. No doubt, you have some adjustments to come and a lot to adapt to – Remember, Life is for living πŸ™‚ and you can – MS wont stop you <3 xo


kcochrane-85
1 month ago

@sdkpi
Hi Sofia
I have been diagnosed 7 weeks ago and still trying to get my head round it. Definitely good days and bad days. This site is really good, be very careful with what you google. I have been finding the stuff Jack Osborne writes really helpful too.
I am still waiting to start medication but there is things you can do in the meantime like make sure you take vitamin d, look after yourself and mainly be kind to yourself. I have been having regular massages, reflexology and acupuncture too as that seems to help me a lot mentally at the moment x


vixen
1 month ago

Hi @kcochrane-85, if you want great info about meds/MS, another huge favourite of Shifters are the Youtube clips by Dr Aaron Boster. Overwhelming if you binge, but lots of simple scientific info from a highly credible source πŸ™‚


kcochrane-85
1 month ago

@vixen thanks will have a look. I was given 3 choices of medication to choose from the neurologist and have opted for mavenclad but having to get more tests done before I can start it. I was told I have highly active ms so keen to have really effective medication to try and stop any progression x


sdkpi
1 month ago

@highlander thank you for this comment! I’m making sure to pace myself because I have a habit in life of getting too into things too quickly and overwhelming myself and this is definitely one thing I do not need to overwhelm myself about. Thank you again ~


sdkpi
1 month ago

@vixen

I realised very quickly how fortunate I am to be where I am. And I kinda knew a bit about MS before my diagnosis because I’m the type of person who kinda just goes off on tangents in life and will sit and read about things that aren’t (well wasn’t at the time) relevant to me in the slightest πŸ˜‚.

I’m very fortunate that I actually changed my lifestyle greatly about a year ago, my diet is largely plant based and I incorporated lots of exercise into my life. This was so aid in weight loss after being borderline traumatised by a doctor telling me the reason I’m experiencing pins and needles is because I’m overweight. Lowe and behold, a year and a half later, it was MS the whole time. So I’m very fortunate that that side of things isn’t gonna be a huge overhaul that I’m going to do.

Smoking however is something that I’ve had to give up from the moment I got admitted into hospital. Fortunately I’ve not smoked for a great length of time. I’ve not smoked since last Tuesday which doesn’t sound like much probably to a lot of non smokers but to me felt like the impossible dream. Also how ridiculous I am for not being terrified by the prospect of cancer but being absolutely struck with the fear of God over MS and how it can impact that. But oh well. I hope to never smoke one of those disgusting things again.

Thank you for commenting on my first post. I’m really excited to get the most out of this forum ~


sdkpi
1 month ago

@amysimpson

Thank you so much for such a lovely message πŸ’š


sdkpi
1 month ago

@kcochrane-85 hello! What a terrible time for us to find ourselves in this situation. From everything I’ve heard and seen there is a big backlog in out patient care at the moment.

Thank you for replying to my post. I’m very fortunate to always have been one of those people with a “if im not going to die then im okay” attitude. I still live with my mum so she’s been helping me chill out and take care of myself because I’m also the type of person who doesn’t enjoy resting and not being busy. She’s also been giving me really lovely massages too which has been great because I’ve having really horrible stiffness and pain in my back.

I hope that things go smoothly for you as you’re starting to make sense of new life! All the best and thank you for replying to my post, it’s nice to not feel so alone


kcochrane-85
1 month ago

@sdkpi
I have issues with stiffness/ lower back pain that I had put up with for years and managed by going for massages and physio. Never thought it could be a symptom of ms. Also I thought I had ibs but turns out that it’s also a symptom of ms.
Take comfort in knowing that the medication is now available to help us.
It sounds like your doing everything you can to manage this x


bernadette
1 month ago

@sdkpi I would ask for the newer drugs, Tysabri or Ocrevus. Personally I recommend the OMS (overcoming ms) website for a positive lifestyle programme to follow. There is a lot of negative inaccurate rubbish online so avoid if you want to feel safe and cope.
Good luck

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