Last reply 1 week ago
Still so new to this

Hey everyone,

I’m pretty new to all of this having only been diagnosed officially in February…. I’m starting treatment in two weeks and to say I’m scared and apprehensive would be an understatement.
Half of me wants to not turn up…. but then I’m plagued with headaches today and I’m thinking maybe I should…..

Don’t know what to be thinking and to be honest I have the best circle of friends and family around me but still feel alone…. anyone the same? 🙁

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3 weeks ago

@craig_sharkey Y E S I was diagnosed 6 months ago and had been livin my life has normal until I had appointment to discuss treatment last week and have went into absolute meltdown. The talk of medication makes it so real, doesn’t it? I’m terrified of it but from what I see there’s so many do so well on treatment and obviously we want to prevent worse MS symtoms. No idea, I’m totally lost with it but got your back. You’re not alone x

3 weeks ago

Hi @craig_sharkey and welcome!
I understand how you feel, I’ve been there not long ago.
I feel I’m living another chapter now: I have MS, I can’t run away from this truth so the only thing I can do is living with it the best I can. I am trying to eat healthy and exercise but I also think that DMTs are very important to fight this disease. Sometimes it’s hard to choose: speak freely with your doctor to find the best drug for your lifestyle and for your MS (symptoms, RMI…). Once you make up your mind, just put yourself into it and you’ll see that your life maybe a little more complicated than before, but the important things will never change. I also find that I’m a stronger person now, I see things differently, I have discovered that I have priorities and some people love me more than others, for who I really am.
I feel lonely, a bit, you’re right. I decided not to tell everybody about MS, for many reasons, and I have been disappointed with the behavior of my best friends, the only ones I spoke with (a part from my family). But I’m sure I am not alone in this.

Wish you the best to you and @katrinaf93 as well. Anything you need, you can find me here!

3 weeks ago

@craig_sharkey Yes feel the same way!! I was also diagnosed in February. Still have not taken the last blood test so I can start medication. I have a had the same headache for 2 days currently laying in bed crying my eyes out LOL feeling completely alone but I have everyone in the world support and lots of love yet I feel like they don’t know what I’m going through. Hang in there just like I am this page it’s really good because a lot of people out here that will give you lots of encouragement and that knows exactly how you’re feeling.

3 weeks ago

Thank you all so much…. I’m thinking this network might be my crutch for a while….. it’s good to know I’m not the only one in this situation and I’m not going to be the last.
My bloods have come back and they are starting me on Gelenya (if that’s how you spell it) lol
@arya you are spot on there…. the doctor told me what treatment I was taking and I was never given a choice…. I think this knocked me a little to be told what I’m doing with my own body.

@megan_velez I know.right….. I’ve had this headache for 3 days now…. yesterday I couldn’t get out of bed and people just don’t understand that…..

Thank you all again so much and @katrinaf93 be sure that I will be hitting you all up with some updates…. I’m happy to see there is this network of people in the same situation…. a little light on a very dark tunnel x

3 weeks ago

@craig_sharkey sorry to hear of your diagnosis but I always think it’s better to get the diagnosis then to have to go through lots of tests and not know what is wrong. I was diagnosed January 2018 after a bad relapse at Christmas. Everything happened so quickly and I didn’t really know what to think.
I was apprehensive about starting meds but in my mind I knew I had to think positively about taking them. The point of DMDs are to help us and reduce the number of relapses which will help us long term. I would just say, try and think positively about why you are deciding to start treatment. Just remember that if this treatment doesn’t suit you, there are many more out there.
Stay strong and be brave. You can do this- you know you can! There will be good and bad days, of course, and it’s not fair that this has happened to us but we’re all strong and can all get through this!! Just take it a day at a time for now while it’s all so new. Trust me, things seem bleak now, but they will get better!!
All the best 🙂

3 weeks ago

Hi and welcome to the club!
Just in case you’re wondering there are blokes on here as well😃
Can’t really add to what has been mentioned before as it covers most things.
Welcome again😃

3 weeks ago

Hi Craig.

Hope your getting on ok with the diagnosis. Its a major head f**k at the start but it does get easier after a while. Theres loads of info online about treatments/diets which is good but it was a bit of an overload for me at the start, so my advice would be to relax and take it 1 day at a time.
Theres a ms group on the meetup app who meet every month in temple bar if you want info etc.

Good luck buddy👍🏻👍🏻

3 weeks ago

I was diagnosed in June 2018 do still very early days too. As I don’t have RRMS there is no treatment available to me but I’m trying to manage on my own, curtesy of Prof George Jelinek of Overcoming MS. Have you looked at it? It’s a lifestyle change (diet, exercise, meditation etc.) so it may be good for you. I’m attending a conference in Edinburgh next weekend so may find out about it.

1 week ago

The likelihood is that going on Gilenya will be a non-event. Yes, the build-up to starting is a stress and you’ll do your day in hospital taking the first dose. Thereafter…….. if my experience is anything to go by, not a lot to say! A daily capsule. One thing does change, though – you enter a programme of monitoring. From now on in, you’ll be checked very regularly to see that the drug is working without (the rare) complications. In other words, someone else is ‘in charge’ of the state of play of your MS. Your focus needs to shift from worrying about the illness to taking charge of your health and wellness. My physio has it in one:’ You need to live a healthy, happy life’. And that takes effort! xx

1 week ago

Craig, read my monthly blog and if possible from the start I started writing because none sufferers have no idea about MS and I know when I was first diagnosed I had no clue, so monthly I write the blog.
You will be fine and I am glad you found this site, we are here 24/7 and feel free to contact whenever, good luck

1 week ago

Hi @craig_sharkey, welcome aboard this friendly but very important bus! Almost everyone on this site will appreciate what you’re going through. I was diagnosed 2 years ago and in reflection, I’d say it probably takes a year to fully process the diagnosis. Just to say, I’ve made so many changes to my life and plans that I probably have a better quality of life now. You do need time to get everything in perspective and it’s great that you have people around you. Post any questions or queries you have. Oh, and avoid Dr Google, stick to legitimate sites like this, or MS Trust/Society. You feel get through this and emerge stronger x

1 week ago

@craig_sharkey I was Dx’d 26 y ago and for several years it never felt far from my thoughts for longer than a minute. All I can say is it will get better.

Because I wasn’t on my hands and knees in front of the docs I was sent away as symptoms had abated. These days that happens far less, at least you are on treatment ASAP and at least there are many more options.

One of your biggest weapons is your attitude. I am particularly bloody minded and persistent and that helped the ridiculous denial that powered me. Nonetheless, it is better than letting the beast get on top of you!

Life may be a bit shit at the moment and you are contending with a heavy mental burden but never ever give up.



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