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Just been diagnosed

Hi Everyone, I am really new to this as I was only diagnosed 3 days ago…still can’t quite believe it but I am sure everyone says the same thing. I have a million questions as when I heard the words MS I went into a complete daze and just started at the Dr but think my main one is I am scared that I will have another attack sooner rather than later as my consultant said it would be weeks rather than days before I receive treatment, is this normal?

Any advice would be great as I can’t seem to get of this roller coaster ride at the minute

Thank you

Hi I can’t really offer advice as I’m still feeling my way too…diagnosed 26th September…but I’m sure someone will…actually there you go…my advice is…use this forum…it makes a huge difference. Just wanted to say hi really Xx

Hi

Thank you so much for replying, it is great to have made contact with someone who knows how it feels

Thank you xx

Hello,

I was diagnosed last april, best advice will be use this forum vent go mad ask questions. We are happy to help.

I was dx in april and started on avonex last month, so it does take time to get the meds going.

Goodluck with it all, we are all here to help.

Darren

Hi Darren

Wow really that long? I am shocked there’s me thinking it would be March timeThank you for your advice tho I appreciate it…I still think I am talking about someone else when I say the words MS but hopefully time will help?

Good luck to you too

Bev

Hi, I am in your neck of the woods (Halifax). Were you having problems a while before getting your diagnosis?

Sounds like MS was a huge shock, in that it was never mentioned as a possiblity, before dx.

But even those of us who had MS in their mind, long before dx, were still shocked to the core, once it was actually labelled.

From what Ive heard, if you attend neurology in Leeds, youll be well looked after.

Have you seen Dr Lily? heard he is really good.

Welcome to the forum, chuck!

luv Pollx

Hiya Poll

No problems at all with diagnosis as I only went to gp in January but completely shocked to the core as I have been a fitness instructor for 20 years and just thought I had a trapped nerve…how wrong can you be?

Have been referred to MS nuerologist but so far just seen a general one a Dr Hassan but he was great

So far joining this forum is the best thing I have done (better than wandering around the house staring at things lol)

Thanks for being so lovely xx

Hiya Poll

No problems at all with diagnosis as I only went to gp in January but completely shocked to the core as I have been a fitness instructor for 20 years and just thought I had a trapped nerve…how wrong can you be?

Have been referred to MS nuerologist but so far just seen a general one a Dr Hassan but he was great

So far joining this forum is the best thing I have done (better than wandering around the house staring at things lol)

Thanks for being so lovely xx

Hi Bev, and welcome :slight_smile:

Even when we expect it, a diagnosis is a major shock. The good news is that you will get used to it eventually, but do be kind to yourself in the short term - your emotions are likely to be all over the place for a while :frowning:

The best way to get onto a DMD (disease modifying drug) quickly is to know what you want and ask for it rather than wait to be asked. The paperwork for funding and sorting out the logistics company etc can take 2-3 months even after you’ve made a decision, so the sooner you do, the sooner the ball starts rolling. The person who actually does all the paperwork is usually the MS nurse; hopefully yours will be touch soon, but if not, it’s worth trying to get in touch with him/her yourself and saying hello & I’ve made a decision. The best place to get good info about DMDs is the msdecisions website. There is a pretty good tool on there to help you choose between them too.

Remember that they are not a cure though and they work to different levels of effect for different people. So no guarantees :frowning:

If it helps, I was diagnosed with MS in 1998 and I was still competing in martial arts 12 years later. So you never know, you may still be a Fitness Instructor for a very long time :slight_smile:

The MS Trust and the MS Society do loads of free booklets about all aspects of MS. I don’t suggest you go mad and read everything, especially as a lot of it won’t be relevant, but maybe have a look at some of the introductory things so you can get a few answers to those questions. Most people know very little about MS and the stuff that’s portrayed on telly is usually garbage! In reality, MS isn’t exactly what any of us would wish for, but it is NOT the end of the world. Life might be different, but it can still be good.

Finally, the post-diagnosis housekeeping, just in case no one has already told you: you need to tell the DVLA that you’ve been diagnosed (they will most likely put you on a (free) three year renewable licence) and you should have a good look through all your paperwork to see if you have any policy that might have a critical health clause - MS is a payable condition.

For now, just take it one day at a time.

Karen x

Hi Karen

I am sat here with tears rolling down my face, thank you so much for all this information…and you have given me some hope too which if I am honest has been short supply since Thursday.

Thank you again x

Hi Karen

I am sat here with tears rolling down my face, thank you so much for all this information…and you have given me some hope too which if I am honest has been short supply since Thursday.

Thank you again x

Im in Leeds

if you want to meet somone with MS mail me

Daniel

Hi Bev, Sorry about the diagnosis - it is a terrible shock. With time you’ll get used to the idea but atm it will feel overwhelming. Allow yourself time to grieve. You’re grieving for the lost you but you are still the same you inside. You will learn to adapt and change to fit this into your life but it doesn’t mean your life is over. There is still plenty of life in you yet! Lean on your loved ones - you really need the support now. Take things a little at a time and be kind to yourself! Thinking of you, Teresa xx

Hi, I was diagnosed in June last year…massive shock! Don’t I have been to the doctors apart from having my 2 daughters. Had run a half marathon and 2 days later couldn’t feel my left side, thought Inhad been running too much, my GP thought I was having a stroke but it was MS. Started Rebif in November I took Rizzos advice and went in fully prepared with what DMD I wanted and had it delivered 3 weeks later. I am starting to feel much better, am back at work and aiming for the gym next week. I cried a lot at first a lot of which was shock but have tried my very best to feel positive. They have caught it early on and have started DMDs early too and this could be the same for you. Its hard to think that life carries on but it does, my husband and children have been amazing and I am determined to get back my fitness as I believe it has helped me recover from that last relapse so well. I may not be able to run 13 miles at the moment but there is stuff I can do for which I am thank ful. Good luck with your journey. Xx

Hi to one Leeds’er from another. I was in your position 10 years ago when dx at the LGI. I am now seen at Seacroft. I started DMDs a little while after dx but started Hyperbaric oxygen treatment straight after dx and still have this locally at the therapy centre in Rawdon. It is difficult and takes time to get used to. Try to take some time to adjust to it, you will get used to the things ms throws at you. I had my second relapse 9 months after dx. Relapses are unpredictable and I have been 2 years since my last one. I have met lots of new friends locally though ms and they are a great source of friendship. Take care Neil

hi bev and welcome,

sorry to hear your dx but welcome to our forum. you will find people will understand what you are going through so any problems, doubts and if you just want to have a rant, we’re here for you. you are not alone. take care.

janet

x

Thank you everyone for your support and advice I really appreciate it, you all helped me feel a little better as it is so difficult to explain how you feel to other friends and family.

I hope to talk to you all much more. xx

Hi,

I’m really sorry to hear about your diagnosis, I know exactly what your going through I was the same at the start of my diagnosis. I was diagnosed in May 2006. Im from Leeds myself and I go to Seacroft every so often to see the ms nurse and Dr Lily.

I’d always be willing to chat about anything.

Ross

Hi,

I’m really sorry to hear about your diagnosis, I know exactly what your going through I was the same at the start of my diagnosis. I was diagnosed in May 2006. Im from Leeds myself and I go to Seacroft every so often to see the ms nurse and Dr Lily.

I’d always be willing to chat about anything.

Ross

Hi Bev, I’ll cross the divide and welcome you! (For those who know nothing of the Divide, the Pennines!) Keep positive. Diagnosed November 2011 post accidently finding out I had MS from falling over post a trail race! Am an avid sportster (running/cycling) so always thought it would be my knees that slow or stop me! Went on the DMDs March 2012 so just completed a year now, one relapse. Thought I had regained my firness from when I was 18yrs old before this happened. Has it stopped me? Slowed me down but still out there (5k race yesterday, just a bit slower. 26 minutes instead of my usual 22 minutes. I put it down to being 41 rather than the MS!)

Keep using this forum and use it to bounce questions off people!

Vince