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So this is scary

Hello all,

Im unsure as to whether im posting this in the right place but here goes, i have my neurology appointment next week there i presume i will be given the proper diagnosis of ms as i have been given a provisional one after lumber and MRI test. Im aware everyone is different, ive had the usual loss of vision, face muscles dropping. im 6 weeks in from my first attack and im terrified! Feel like im waiting for the next thing to happen, ive recently started having muscle spasms but they tend to be only at night when i get into bed is this the norm? im finding my muscles are tensed throughout the day again is this the norm? im now being told to question all treatment as people have found treatment can actually make it worse, has anyone experienced that?

Thanks for reading :slight_smile:

Hi Kylla,

Your questions and concerns are similar to what many people have been through so you should find support here. I’ve had MS outwardly since Oct 12 and got a provisional dx June 14.

I go to an MS class and that’s shown me how varied peoples experiences can be. So if you’re cognitive and capable be active in your treatment and lifestyle choices- both of which have many options. Most Neuros will recommend a Vit D3 supplement. I’ve taken 5000iu since dx. They also recommend being on a DMD and that’s another choice. I’ve been on Tecfedira ( a pill twice a day) for 18mths, having injected Avonex for a year before that. Apart from a manageable side effect of hot flushes it’s fine. Tecfedira and many DMD’s have FB support groups but most information is on the forums if you search through.

one of your toughest battles is how you cope with your change of circumstances. I recommend being positive, exercise as best as you can, meditation and a healthy diet. It’s not always possible but you’re unfortunately always going to have MS so do what you can while you can. Plan for your future but don’t worry about anything before it happens. I believe that worrying only makes things happen twice, what will be will be.

whatever your path is on your MS journey there will always be people better off than you and also worse off than you, so you can also come on the forum to ask for advice or seek it out. If the MS society has a branch near you then I’d recommend getting in touch, there they’ll be real MSers who you can talk to who have a lot of experience too.

Good luck, keep your glass half full

Adam

2 Likes

Thanks AB1707 its reassuring to know im not a whinging burden on here, im very positive and my glass is always half full i consider myself to be strong, but my god this is testing me!

As for treatment i wouldnt have a clue what a DMD is or any of the others haha im sure i will find out next week though.

Thanks for the point in the direction of the facebook groups, i would have no clue.

Thanks again :slight_smile:

hi kylla

adam has already given you good advice.

so glad that you intend to stay positive,

my glass is half full - mainly because if i have a full pint i spill most of it on the way back from the bar!

carole x

what the what???frown

Hello Kylla. Welcome to your new normal!

Hopefully you will be given the bad news of a positive diagnosis and you can get on with sorting this nonsense out!

The worst aspect of MS is the not knowing. You will receive the bad news in one form or another and then you will take your sweet arsed time to come to terms with it. This might take you hours / days / years / never, to realise. You will then have to simply accept the fact that some questions you will never have the answers to.

We, like the disease symptoms we live with, are all different. the same can be said for those things in our lives which trigger a relapse. but with that being said, the best thing you can do is chill out. stress is a brutal bugger in making a bad MS situation worse.

first things first… get that appointment over with and act upon what information it provides you. if you end up being eligible for a DMD (disease modifying drug) then we have resources to help you choose which one (although i could make a recommendation laugh).

In the meantime, treat yourself like royalty. sleep lots. indulge in relaxation. eat quality foods and booze. none of this junk food / ready made meal garbage. take a lot of vitamin D and maybe B12. drink lots of lovely water and be “ohm”.

Hi Kylla

There is no normal I’m afraid and you will re learn even your own baseline, also there certainly is no right or wrong way to deal with an ms diagnosis. Just do what is right for you ! Whatever makes you feel like you’re in some sort of control. I went from relieved to know it was ms and I wasn’t going mad to grieving the things you can’t think about at first. There is plenty out there about DMDs and you could always post questions on here someone will always be able to help. Please do let us know how you get on next week and stay positive ! x

Hello mulls,I’m new on this forum as well.I have learnt a lot since I joined.other is always great advice ,you’ve got it ,felt it or simply worried over it then this is the place to get support.my diagnose was a long time coming like the other"elite"as I call us you will deal with it in your own way.try and not dwell on your diagnose that was the best advice a nurse gave me.it’s hard but you get on with your life.

Rosie. I

Omg what is mulls see this predictive text…

You’ve been given lots of usual advice. What I would add is to start here with help choosing DMDs

https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions

Hope link works. Sorry can’t work out how to shorten it. If it doesn’t work just google ms decision aid.

Thanks everyone! hah Carole so im still allowed to drink then? My family are wrapping me in cotton wool telling me im not allowed anything bad for me! Ive heard taking up the vegetarian life helps with it, i dont think i can give up meat!

Thanks Paolo i like the advice ( treating myself as royalty) im making sure i take full advantage of my situation with the other half hah i have my own personal butler at a weekend, im sure the novelty will wear off in time.

Thanks Rosie, im trying not to dwell as you will know its difficult, mind over matter and all that jazz. have you suffered with it long? Having only dealt with this for a short amount of time, so many things in the past are all coming together, i just thought i was a hypochondriac who just constantly had something wrong with me hah :slight_smile:

Thanks for the link smurf il take a look!

I appreciate all the support, i cant seem to talk to family about how im feeling because they just dont understand, glad i found this forum!

:slight_smile:

oh and thanks Flutterby! Yes i know exactly what you mean about the different emotions, i think im at the i dont give a s**t anymore stage haha… x

i’m sure the occasional pint (s) is ok.

it hasn’t killed me yet.

carole x

Hahaha! That one will get you through and yes Carole has a point or is it a pint !!! Disaronno is my personal poison and it hasn’t killed me yet either x

Hi I got have got ms got digonosed 2009 I have been fine until last 6 months trouble with my left eye and feeling crap my right foot not doing good as an limping my balance rubbish I have a new appointment with neurology in a week Thursday I am hurting all over pins and needles does anybody have seizures ?