perf1 10/04/18
Last reply 1 week ago
Newly diagnosed

Hi everyone.

I am new to all of this. I have just today been diagnosed with MS. It’s so scary and I am trying to learn so much in a short time. Any advice gratefully received.

Thank you x

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marcyg921
1 week ago

Hi,
First of all sorry to hear about the diagnosis. Second don’t be in such a hurry to learn everything because everyone’s journey is different and with each passing day you’ll learn what works for you. I would expect the next steps for you would be treatment options so you’ll need to look into them and have a discussion with your Neurologist about what you feel is best for you. Just take it easy because for awhile you will feel a whole range of emotions but this is because you’ll be on the road to acceptance, it is a long one but one that does need to be travelled so please look after yourself and we’re all here if you wanna talk.


grandma
1 week ago

Dear perf1 hello and welcome, you must have so many questions, but don’t overload your brain too much, nothing morse than stress for ms. Take a deep breath, sit back and relax. Start a list of all the questions you want to ask the neurologist when you see him/her. You have come to the right place, so when you what drug (if any) you knyou are going to be on there will be lots if people here on the same so will be able to give advice. Don’t rush things, being diagnosed is a major shock and you need time to assimilate things, when you have a specific question, ask away, we’re quite safe here, you can have a moan, a chat, a rant, a celebration, anything you like we’ve all done it before. With ms there is no such thing as a silly question! Keep your chin up and deal with one day at a time.😍


vixen
1 week ago

Hello @perf1. Gosh, just looked at your profile and saw you’re about to have a big birthday. I hope you’re still gonna celebrate, because despite this massive whallop you are still you and always will be. How long have you been experiencing symptoms for? This is such a great site, you’ve done well to find it so soon!

My advice would be to take time to absorb the diagnosis and not to rush into making any assumptions or decisions. A big thing to do at this stage is to have a look at lifestyle and look at any way you can limit the potential for overwork, stress and anxiety. That may sound strange but you need to be the greatest friend to yourself while your emotions unfold. Also, the idea of MS has moved on enormously especially in the last 20 years. There are new, improved treatments and around and exciting things in the pipeline. Try to avoid the urge to endlessly google, and stick to official sites such as MS Society, or Bart’s site, for example. You have lots of support on here. You will be OK, please know that. I’m sorry that you’re going through this especially now. But make sure you take a deep breath and celebrate that birthday. X


cammo
1 week ago

@perf1 my advice would be to not stress to much about it.
Get your ducks in a row – Find an MS Neuro, choose a drug, connect with a few MSers and then forget about it.
MS will not kill you or even shorten your life expectancy. If you take care of yourself (exercise/diet) you will probably outlive non-MSers. It’s not a big thing.
Try to find the benefits in this diagnosis – You now have the opportunity to explore a new career, leave work on time, shed a few toxic friends, have a nap whenever you like, cancel plans without thinking of an excuse, go on that holiday you always talked about… the list is endless, it is great.
Good luck boss


edmontonalberta
1 week ago

@perf1

I agree with what others have posted yet, first things first. There are 4 variations of MS – each presents different challenges. Plus different treatment options.

Once you know, update your profile. Then chat with those with your variation…


perf1
1 week ago

Hi guys, thank you so so much for your posts. I have taken on board all you have said thank you. As ‘grandma’ mentioned I turn 40 on Saturday. Not really wanting to celebrate at all but I haven’t told my family yet and they have plans for me.

Anyone got any thoughts on diet please? I can see a big thing is being gluten free? Is that miserable?

And reducing stress. I have problems with that too. I will just come out and say it so apologies for my bluntness if this offends any of you, I was raped in my workplace 4 years ago. The court trial finished only this time last year and I am still involved in a complaint against another person for threatening me at that time. I still travel there most days and have to deal with much hatred as the man has been sacked. I suffer from PTSD (only diagnosed 1 month ago). I work in a hospital which is so stressful too, patients get so sick and death is definitely a weekly occurance on my shift. An all round stress box that I can never escape. Only last month I was suicidal, to add this to the mix, well….

However even just you all giving me some of your time has made me feel slightly better thank you x


stumbler
1 week ago

@perf1, I am so sorry that you have had to deal with this event in your life. No human being should treat another in such a way. Unfortunately, the stress of having to deal with those circumstances, may have had an impact on your present diagnosis.

But, that is all history. What has been done, has been done and for your own sake, you need to try and file that away in a box and move on.

I realise that that is much easier for me to write than for you to achieve. But, I wish you well in recovering from this.

As for the recent diagnosis (who says that life begins at 40,eh?), there is good advice above. This is also a lot to take on board and, as has been said, will take time. So, do be patient with yourself.

There is some good introductory reading here :-

https://support.mstrust.org.uk/shop

Follow the “Newly Diagnosed” button.

And, let us know how we can help you.

Sending cyber-hugs, as I feel you need them, to make you feel safe and valued.


world25
1 week ago

Hi @perf1

I understand how you feel, I was diagnosed in Jan this year 3 days before my 25th birthday and the day after a close family member passed away.

All I can say is stay positive, enjoy your birthday and then think about everything after you’ve had time to enjoy yourself, don’t put your life on hold for MS and don’t let it control you.

I have been through a similar tramatic experience as you and feel like this is a reason why I got my MS as it seems to be like every time a bad experience or emotional experience happens I get a replapse.

I am trying to be gluten and wheat free and follow slimming world recipes it’s very easy to follow and I have felt a lot better since doing it. I am waiting to start treatment and have tried lemtrada.

Hope your feeling better and you can private message anyone on here if you didn’t know to private chat 🙂

X

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